Monday 25 September 2017

Osteo arthritis and me

8 October 2018

 

I am now a bionic man.  I had a total hip joint replacement about a month ago. Walking without crutches for about a week, around the house.  Need a crutch for peace of mind when I go out.

What a shemmozzle the hospital was. Sunshine Coast University Private Hospital, supposedly a teaching hospital.  Plenty of nurses, chefs, physiotherapists but very very few doctors.  I saw the operating doctor about 12 hours after the operation and that was it.  I tried to see an ordinary doctor because the blood thinning injections I had to take was meaning minor injuries weren't healing. They healed 3 weeks later when I stopped the injections.

When it came time to leave 5 days after the surgery, a Sunday, a real cockup.  I was told 8amish on the Sunday morning I was leaving at about 10am.  No time to arrange any sort of lifts so I had to get the hospital to call a taxi.  I needed one of those large taxis that would let me get in without too much bending, because I couldn't bend.  First one was a Hyundai car.  The hospital tried calling twice more and the taxi company just didn't bother.  Defintiely need to fix things up there people.

So I walked to a bus stop with one of those wheely old people walker thingies, a pair of crutches and a backpack.  Got home eventually but why not have things in place to help you patients?

A regional nurse was supposed to come and see me for the dressing and wound.  Still waiting.

A physiotherapist was supposed to come visit the first week, they didn't. They were a fortnight late and seemed to be here for only 6 minutes.

Sleeping is a worry, I can't sleep on my hip operation side yet.  And when I turn over I wake myself.  Two hours sleep, an hour awake.

I can muddle my way around the house. Cooked tea last night, started doing the dishes. Putting the bins out.  Almost normal.

For a teaching hospital the Sunshine Coast University Hospital is bereft of any information for patients. I was surprised there is nothing online, no information, no video, nowt.  Thank goodness the USA teaching hospitals actually do their job properly.

So that's me.  No more on this blog - seeya and good luck with your lives.

 

17 May 2018

 

My GP suggested I stop using the pentosan nasal spray.  I have had problems with small cuts not healing properly.  She thinks that because the pentosan is a blood thinner it is causing problems. I stopped the spray and the healing returned immediately and after a few weeks the hip pain too.




I have osteo arthritis in most of my joints.  The only place to escape is a knee that was diagnosed as rheumatoid arthritic about 10 years ago.  When I had the full body scan 2 months ago that found all of the osteo joints the rheumatoid arthritis had disappeared. cured?


I found out about pentosan polysulphate sodium in an email some news company sent to me and heard about it on the BBC world service.  I looked and decided that's for me.  And then the fun started.  No chemist in my town had heard of the stuff and that's where it came out the chemical is great for horses.  None of the vets I knew wanted to sell it to me and then I found this link. bingo

I will be getting my first lot early next week so this blog will be a tour through the trip of human testing of a horse drug.  My doctor has agreed to monitor me, she has hundreds of patients loaded with osteo and one with the brains or idiocy to try to fix it himself.  I wont name my doctor until she wants to be named, I am unsure of the ethics of letting a patient self test on what was basically horse medicine until a chance discovery it helps with osteo arthritis.

For the politicians, I am a disabled pensioner and have had to give up buying food this week so I could afford the medicine.

For those reading the blog I can feed the pair of us from the garden for a month or three and there is about 4 months of food in the pantry and freezer.  But I planned to have bought a $150 worth of food to top up things.

The cost of the medicine is $210 delivered and that is 3 months of the nasal spray.  The idea is I use until the joint pain goes.  Because I am on a lot of pain killers for my almost ceased up hip, bung knee and vertebra from when I broke my back playing rugby I will go off the pain killers one day a week to see how the horse medicine is working.  I will try to log what's going on in this blog.

Any reporters  or media outlets who want to use what is in this blog please pay the going rate.  I know there are almost standard rates so it would be nice if you gifted them to me in the paypal bit below.  If it is The Guardian the rate is double until Lenore Taylor and Vanbadham unblock me and apologise for the birther rantings.

For anyone using this in their own blog, think about a gift for the poor old bastard undergoing a trial that may benefit a lot of you.

If you decide to try it yourself make sure you contact your doctor first.  You will need a script and then let Complementary Compounding Services know you heard about it from me.

This isn't a properly set up medical test, there is nothing that would match the magnificent work of researchers in our universities but its a start from a bloke who wants to try and help.

27 September 2017

Filled in the online form, the prescription button near the top Needed to scan my prescription to send with it, I used Cam Scanner and hey presto. Next to do is to post the original script to Complementary Compounding Services and wait for them to give me a ring for the credit card details.


3 October 2017


The sniffing has started,  the nasal spray arrived today.  Two sprays up each nostril once a day.  I will do the next report on the 10th.

5 October 2017

Just a reminder this isn't a scientific trial, there are no double blinds, no daily monitoring.  It is me.  Two days of sniffing and my ankles don't click when I rotate my foot.  With the sniffing, lean back to do it and don't be frightened to sniff in the fluid in your nose.  No idea if that is collected spray or nasal juices reacting to the spray coming into your nose. Suck it and see, keep it in the body it my be good for you and at worst can't harm you.  I had a walk to buy some fruit at the greengrocers in town. Recently a short walk like that would be extremely painful in the hip and back for two days afterwards. No problems.

8 October 2017

Definitely feeling different, lighter? Or lighter headed? Strange feeling all over.  Not unpleasant, softer, smoother, lighter is the best way to try and describe it.
Waking up with very dry mouth. Don't know if it is the pentosan?

9 October 2017

No painkillers started this morning, will be interesting to see how that goes.  Last night was left hand side clicking night.  Joints from ankle to knee to hip to shoulder all got vocal which they haven't done for 12-18 months.  Does that mean the joints are freeing up,not as swollen? No idea,like I said this is not a scientific study just a record of what happens to me. I will google it and see what doctor google says about joints becoming vocal.

17:20pm  hip starting to ache.  I will sleep without pain killers and see how things are in the morning.

10 October 2017

Early AM and a bit of pain in hip and knee. Will go back on pain killers after breakfast.

11 October 2017

Some very loud joint cracking last night, mostly hip.  Audible to my wife so wasn't internalised.  Major pain in back this morning,more muscle than joint. Yesterday & this AM found hip moving where it hasn't been for a while and causing sharp pains.

Today is my shopping day.,the day where I try to be as normal as possible and put up with the bastard pain. It's the butcher, the baker, the green grocer and a newsagent that sells lotto tickets.  (so many local newsagents are not selling lotto because tatts has imposed a $30,000 fee on them) The pain is sharp and bad but I don't think it is as knockout bad as last fortnight.  I am holding a lot of hope in this horse pill nasal spray.

14 October 2017 Pain from walking eased up a lot quicker than "normal". Joints clicking and clacking, is that because the swelling is going down or the build up of arthritic material is lessening? Don't know, time will tell.

16 October 2017

Another day off the pain medication to see how things pan out. Some pain but can be handled. Doctor lowing pain medication by a third to see how that goes.  I will start it again in the morning.  Expensive medication for a pauper but if you do have osteo arthritis I would recommend you look at at least trying it.

Walked around town today, dog food, bakery, chemist for pain medication.  Got wet but could do it.  My joints seem to have freed up quite a lot.

19 October 2017


A warning for anyone who decides to use the horse pill nasal spray.  I am in what might be called extreme pain today.  I don't think the medicine has worn off or the reduction in my pain killers was too much.  I had three days of a little walking and muscles that haven't been used for a long time are telling me to ease up a bit.

24 October 2017


Twenty one today, twenty one today....The sniffing of the horse pills really does seem to be working.  It isn't a massively quick magic fix, but so many parts of my body are feeling that little bit easier.  My hip was always the worst case scenario and it does let me know that pain is a real thing.  But it is moving a bit easier, I can bend my leg up a lot further than I have been able to in recent years.  Maybe by christmas I can go back to wearing shoes with laces?  That would be nice.

The medical treatment for osteo arthritis is put up with the pain and watch your body stop working or use massive pain killers to help hide a lot of the pain (but not all) and watch your body stop working.  Pentosan polysulphate sodium in the nasal spray seems to be helping me.  I would recommend you try it for yourself.  Anything is better than sitting back mellow on pain killers while your hip or knee or wrist and fingers slowly cease up.  If it doeskin work at least you will have tried to do something about it.

One day medicine and investment companies and the uber rich who donate money might realise osteo arthritis is a bastard of a thing and something should be done about it.


30 October 2017

Another week flown by.  Nearly due for another bottle of the nasal spray. Don't know if it is the pain medication I am on or what, but pain had some big twinges this week but not where I remember having them.  Hip pain used to be above the ball joint this week was the front of the leg in the groin.  Like a muscle strain from rugby in the long long ago.

1 November 2017


For anyone who doesn't have osteo arthritis this will sound strange but I woke up this morning very early and could bend my legs they way they haven't bent for years and got the soles of my feet touching each other. Could not get back to sleep because of the huge grin on my face.


7 November 2017

Another week done.  Nasal spray has finished, it lasted a good time.  Now for the pennies to magically come together and order another one.  I will be paying for another one because the change so far has been quite excellent.

21 November 2017

Missed a week?  Sorry.  Politics in Australia got a bit too interesting and I tried to do my bit to bring the government to account.

My doctor reduced my pain medication, now a third of what it was when I started the nasal spray.  Too much too early I think. Massively huge enormous bad pain and agony.  Trouble walking or standing because of my hip and back.  The back is mostly muscle pulled out of kilter by my hip and leg not working/walking properly.  My hip?  So many little clicks and pops that never used to happen,  Is this pentosan stuff working and the pain caused by the tissue repairing?  I don't know and wont know for a while.

27 November 2017

Another week and huge reduction in pain. Done nothing different, the pain from last week just stopped.  Tapping head because no wood available. Had some big twinges but nothing constant.  Walking this morning again might stir it up.  Will see.


4 December 2017

Less pain and much more clicking in the hip.  Is clicking a good thing?  My hip has been so stiff for a few years now that clicking just didn't happen.  Is it loosing up? Is it easing?  Don't know.


6 December 2017

Interim report.  One of the problems of having a hip that wont bend because of osteo arthritis is not being able to cut my own toenails.  Total embarrassments with that.  Today I was able to bend enough to cut the toes on the foot on the side of my bung hip.  Toenails cut but massive huge enormous gigantic pain.  I guess my hip and muscle structure had not been mobile for such a long time that I stretched things massively.

11 December 2017

The pain killers my doctor has me on aren't working.  It's a patch and seems to work 5 or 6 days a week, it is supposed to be a 7 day patch.  And even then there are days where it may as well not be on because of the pain.  No idea if the pentosan is still working or helping because of the pain I am in from my hip.


16 December 2017

I convinced my doctor to stop using the morphine patch and give me something else.  Most sorts of anaesthetics don't work properly on me and the morphine patch is yet another.  It seems to amplify the pain.  The patch stopped and so did the hip pain.  Broken back and the stuffed up muscles in the back are still there and still a reminder of what pain is but the hip?  Is the pentosan working?  I would have to say it is starting to work.

6 January 2018

Some queries and some people trying it.  The cost is $200 for a small bottle of the spray, not $200 for 3 months.  The script is for 3 bottles of the spray, about 3 months worth.

Personally I stopped the massive pain killers for my hip.  I get muscle pain in my back, but with a back broken 40 years ago I guess there will always be pain there.  There has been pain there for all of the 40 years I have lived with it.  The muscle spasms will sort themselves out with exercise and with the hip being so much better exercise is only an attitude problem now.


30 January 2018


Been a while.  Pentosan is still working on my, back spasms and muscle pains still a pain in the back.  ABC called and they may run a story about the costs of medicine.  My choice in the first weeks was food or $200 for the Pentosan.  Luckily we have a garden and a freezer and choosing to go without buying food wasn't as drastic as it is for some.  Now I am almost organised and know I have to spend $200 a time to get the hip improving.

9 February 2018

I have been asked by people if the nasal spray is still working.  It seems to be.  Had what I thought was my hip disjointing the other day. Very painful but very quick.  Seemed to slip out and then in or that's what it felt like to me.  OK now.  Still mostly the back pain but I am doing what I can to stretch and strengthen those muscles.

23 February 2018

Went to the hospital today to talk with an orthopaedic surgeon.  I am now on the waiting list to get a hip replacement.  I will continue with the pentosan and make the final decision when they xray me for the operation in ,6,12 months time.  If there is marked improvement on the xray I will decide for sure then.

28 February 2018

Might sound strange going to a specialist about an operation but I am just covering all bases.  And after the last two days when for some reason the pain has been extraordinary.  Haven't had pain for quite a while and haven't taken a pain killer for yonks.  Had to take one today and it doesn't seem to be helping at all. Did some gardening yesterday which seems to have caused the problem.

16 March 2018

The pain I mentioned a few weeks back is caused by popping in the joint.  That's the best way I can describe it, like when  a cartilage pops in your knee or a wrist clicks?  When it pops pain is big.  But not for long. Most of the time I have been pain free. After years of taking massive amounts of Tramadol this is a big change.

23 March 2018

Read the label, LOL.  It is a blood thinning agent and may cause problems with cuts etc.  It does.  Be careful and watch what you are doing.



Thank you to those who have PayPal'd me, much appreciated.  Being PayPal I can't thank you personally because your personal details are kept private.  Very much appreciated to have the support, in gifts or words, from so many people over the past few years.

Cheers thanks & goodonya


90 comments:

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    ReplyDelete
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  2. I am following your blog with all pinkies crossed that it will end up doing the job. Thank you for posting your progress, take it slow and steady, it's taken a long time to do its damage and may take sone time to repair the damage that it's done, production of new cartilage takes a while. Hang in there.I had fantastic results on my dogs frozen hip and leg using shark cartilage, after being frozen for yrs, it freed up after 6 weeks on it and I could bend easily like butter, it was like normal again. My vet had tried everything with no sucess, he could not believe the results. Humans can take it too, avaliable in most chemists and you don't need a script for it.

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  3. Arthritis is a chronic disease that affect muscles and soft tissues. There are more then 100 types of arthritis available. The patient of this disease have to learn how to live with this disease. Because this disease has no cur. Arthritis treatment

    ReplyDelete
    Replies
    1. No current arthritis treatment, hopefully my little experiment might point in the right direction for treating osteo arthritis. Maybe what I am doing will push science to looking at real treatments for us all?

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  4. Hi, thanks for your blog! My mum and I have both recently started this Pentosan spray too and we were wondering how you've been getting on with it since you last wrote?
    Also wondering where you had it filled for $200/3 months as we've just had to pay $200 for one month worth.
    Would love to hear! THANKS!

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  5. Might have been the way I wrote it? I paid $200 for each bottle and the script is for 3 bottles.

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  6. Thanks so much for updating! Do you feel the Pentosan is helping now that it's been a few months on it? We are near the end of month 2 on it. It's hard to know whether improvements are actually that or imagined, it's quite subtle, but also feel I've needed less painkillers and some other symptoms like headaches have reduced.

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    Replies
    1. Seems to be still working. I am very happy with it. If you are using less pain medication something is happening and hopefully something good.

      Delete
    2. Just wanna say a big thank you Sandra Precious for introducing me to Dr Odila the great HERBALIST that helped me prepare home remedies that cured my sister CHRONIC PAIN CALLED ARTHRITIS AND CANCER DISEASE

      She was infected with Arthritis. and cancer for the past two years and she was not happy all day so i was desperate to get a cure so that she can live normal and get healthy.
      One day i was less busy so i decided to make latest research on chronic and cancer cure and i found a site were everyone was talking about Dr Odila and has ability to cure Arthritis and cancer and all manners of diseases and virus.
      So i discussed with Sandra Precious and she explained to me that its very easy working with Dr Odila so i contacted Dr Odila via email (drodilaherbalhome@gmail.com) and he helped me just as he has helped others now my sister is now cured she is very happy now.
      and i can also assure you that he can also help you. so if you need the service of DR Odila, ill put his details here so that you can easily get in touch with him. contact him drodilaherbalhome@gmail.com or whatsapp +2348159047935
      he can as well cure Psorasis, copd, Extreme vaginal burning & pain, Reoccurent vaginal yeast infections, Candida overgrowth, Cystitis, cancer,ALS, Alzheimer's Disease and other Dementias, Arthritis, Asthma,Cystic Fibrosis,kidney disease,Herpes,hiv, hpv.Seizures visit his website https://drodilaherbalhome.weebly.com/ here is my private email: viviansharon11@gmail.com.


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  7. A story about another "cure" for osteo https://www.dailyrecord.co.uk/news/uk-world-news/miracle-jab-could-provide-pain-12008787

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  8. Keep up the good work! I'm in the process of trying to get some PPS for myself here in New Zealand. Unfortunately, Complementary Compounding Services will only supply on an Australian prescription. My doctor is trying to sort out how we can get it here. I might have to travel to Australia to get it. In the meantime I'll PayPal you a few dollars. Cheers Don.

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  9. Hi Tony! It looks like I'm not going to be able to access PPS in NZ - which means I may have to come to Australia to get it - or find a doctor over here who's registered in Australia AND sympathetic! That's bit of a long shot!
    I don't have a problem coming to Australia if I have to but I'm still going to have to find a doctor that will prescribe it.
    I note you won't say who your doctor is - fair enough - but I wonder if there's a way we could communicate privately and whether you might feel OK about telling me that way - or perhaps asking her if she would mind you telling me?
    Right now it's looking like I might have just as much trouble finding an Australian doctor prepared to prescribe it as I am in NZ.
    Cheers
    Don

    ReplyDelete
  10. Sorry I can't give my doctors name out. She doesn't want to.

    ReplyDelete
    Replies
    1. Fair enough. Thanks anyway.

      Delete
    2. Just wanna say a big thank you Sandra Precious for introducing me to Dr Odila the great HERBALIST that helped me prepare home remedies that cured my sister CHRONIC PAIN CALLED ARTHRITIS AND CANCER DISEASE

      She was infected with Arthritis. and cancer for the past two years and she was not happy all day so i was desperate to get a cure so that she can live normal and get healthy.
      One day i was less busy so i decided to make latest research on chronic and cancer cure and i found a site were everyone was talking about Dr Odila and has ability to cure Arthritis and cancer and all manners of diseases and virus.
      So i discussed with Sandra Precious and she explained to me that its very easy working with Dr Odila so i contacted Dr Odila via email (drodilaherbalhome@gmail.com) and he helped me just as he has helped others now my sister is now cured she is very happy now.
      and i can also assure you that he can also help you. so if you need the service of DR Odila, ill put his details here so that you can easily get in touch with him. contact him drodilaherbalhome@gmail.com or whatsapp +2348159047935
      he can as well cure Psorasis, copd, Extreme vaginal burning & pain, Reoccurent vaginal yeast infections, Candida overgrowth, Cystitis, cancer,ALS, Alzheimer's Disease and other Dementias, Arthritis, Asthma,Cystic Fibrosis,kidney disease,Herpes,hiv, hpv.Seizures visit his website https://drodilaherbalhome.weebly.com/ here is my private email: viviansharon11@gmail.com.


      Delete
  11. Tony, if your nasal spray label indicates the composition of the product (say mg/ml) could you post the numbers here. I'm also in NZ and have found it impossible to obtain the product here in spite of my doctor being willing to write a prescription. I have a plan to make my own!

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    Replies
    1. Hi Michael! I have been unable to find a GP willing to write a prescription so I'm currently planning an extended trip to OZ to visit a clinic over there that advertises PPS on their website. However, in the course of my enquiries I spoke to my pharmacist about the possibility of using the contents of Elmiron capsules (which are available on prescription in NZ) and removing the drug from the capsules and dissolving it to make an injectable solution. Apparently PPS dissolves in water easily. She said it is "technically" possible and she would just need my GP to specify the formulation. The formulation is specified in the details online of the drug trial being carried out in OZ at present so if your GP is willing to specify the formulation your pharmacist should be able to make it from Elmiron. Get back to me if I can help further.

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    2. Thanks for that Don. Could you provide a link to the formulation specified for the drug trial?
      I will investigate your idea.

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    3. Hi Michael! Here's the link:
      https://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=373400&isReview=true
      This bit would seem to cover the formulation:
      2mg/kg Pentosan Polysulfate Sodium (100mg/ml injectable solution), administered by subcutaneous injection, twice weekly for 6 weeks.
      I'll be interested to hear how you get on.
      I have an appointment in Melbourne on April 30 to see this place:
      http://www.brightonspinal.com.au/wp-content/uploads/2015/09/PPS-Information.pdf
      Hopefully, I'll get the treatment there.
      Cheers
      Don

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    4. Thanks again Don,
      You can source Comfora which is equivalent to Elmiron here:
      http://www.genericmedsexim.com/search.html?ss=pentosan
      Good luck with your treatment.

      Delete
    5. Hi Michael!
      Yes, you can also order it on alibaba.com. Just do a search for Pentosan. Lots of suppliers come up.
      You can also order the animal injection version here: https://racehorsemeds.com/product-category/joint-supplements-hyaluronic-acid/ but note their disclaimer about it not being for human use. Still, it's probably OK and being already an injectable product it's probably easier to water it down to whatever concentration desired.
      However, the problem is getting it into the country. For that you'll need a Doctor (or Vet's) prescription.
      I also have some concerns about what the quality or safety might be when ordering it from India or China over the internet. My feeling is that if your doctor will prescribe Elmiron, that is then provided from a reputable NZ source, then that it probably the safest approach.
      But let me know how you get on.
      I don't know how I can send you my email address so that we could communicate privately. Not without it becoming completely public that is. However, if Tony doesn't mind I guess we can keep using this forum.
      I'll post on here how I get on in Australia in due course.
      Cheers

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    6. Don
      You are probably aware of this but I'll post it anyway.
      http://www.naturalmedicine.net.nz/wp-content/uploads/2013/10/1-Polisulfate-to-PDF1.pdf

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    7. Yes, thanks Michael. I have seen this. In fact, I've communicated with the author, Linda Curreri, who lives in Dunedin. I wanted to check that her positive results have continued after all these years and they have. She is still very positive about what PPS has done for her.

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    8. @DON: Hey we are manufacturers of Pentosan . We are trying to contact Mrs.Linda Curreri for the past 6 months any contact email id if you could share will be helpful.

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    9. My email id is vigneshkanna91@gmail.com

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    10. Hi! I can't give you Linda's contact details. That would be infringing on her privacy. However I have sent your request on to her and it will be up to her if she replies.

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  12. That's not good news Tony! But from what I've read PPS is not supposed to be used constantly. Maybe the nasal spray dose is too high for you. I read some where that it is typically a higher dose than the injections.
    I'll keep my fingers crossed for you.

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  13. Hi and thanks for the blog!
    I had a prescription filled for PPS back in November but gave up with it after a couple of weeks as it seemed ineffective.
    But due to acute gastritis possibly caused by long term NSAID use, I've had to stop taking Celebrex and all the joint pain in spine, shoulders and fingers has returned with a vengeance.
    So, back on PPS today and results, if any, should be unmasked by other pain killers now.
    Good luck with the hip replacements....having both mine done has been totally life changing.

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  14. Hi Tony, was just wondering how you've been going and did I read that you went off the Pentosan?
    My mother and I are still persevering on it, it's been about 7 months now.
    Would love to hear how others might be finding it still...

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  15. Hi Tony! (And others)
    I eventually traveled to Melbourne and saw the doctor at the Brighton Sports and Spinal Clinic. He considered me suitable for PPS and applied to the Therapeutic Goods Authority for me to be given access to it under their Special Access Scheme. That was granted and he then applied to Paradigm Pharmaceuticals Ltd, who are running the trial of PPS, to get the drug. Unfortunately, they turned me down! apparently I didn't meet the "risk profile" for the trial!
    Anyway, eventually I was able to get a prescription for the injectable form of PPS - identical to Paradigm's trial formulation - and after getting it from Complementary Compounding Services - I brought it back to NZ with me and I've been getting the injections from my GP (her nurse actually!). Apparently I could have given myself the injections but I'm a sooky when it comes to needles!
    I've had no problems with it and I had my 9th injection (of 12) today.
    There's been a significant improvement in my pain levels - probably about 25 -30% - and I've 3 injections to go! My understanding is that even when the injections are completed I can expect some further improvement for a few weeks, or even longer. But even if this is as good as it gets I'm happy - though of course I'd like better!
    So the big question now is whether the improvement will remain after I finish the course? Time will tell.
    Not a magic cure then but definitely worth doing!
    I don't know much about the nasal spray version - obviously it's different from the injections I'm having - but I thought the point of PPS was that it was a permanent, or at least a semi-permanent, "cure", That unlike other treatments for arthritis it didn't just treat the symptoms but actually promoted healing. Wouldn't continuing to use it regularly be more likely to lead to undesirable side effects? Particularly with the blood thinning properties of the drug? How's it working for you and your Mum, Yummy Mummy Food Company?

    ReplyDelete
    Replies
    1. Was so excited to come across this blog as I am currently also undergoing PPS injections via a clinic in BoxHill Melbourne and was desperately hoping to find feedback from others who have used this drug treatment. Thanks to all the contributors.
      I had my 5th injection today and I am still hopeful for positive results.
      I apparently have moderate degree OA in both knees which by some peoples diagnoses is not bad ... But the pain and physical disability experienced over last 8-9 months has been pretty extreme.
      My quality of life and ability to do so many things I'm used to has diminished considerably. Plus have experienced quite profound muscle atrophy and loss. And weakness..
      My GP and rheumatologist couldn't give me any great answers or help in managing or coping with pain so I went researching on my own.
      And discovered all the info and research on PPS.
      I know it's early days yet but sensations and some feelings in my general knee area seem to be different somehow... Is it my imagination????
      I still work full time.. And have managed lately to have had virtually no sick days... The sitting at work is a killer. But no chance of not working just yet. Need to to pay for the treatments, consults and follow ups but have fingers crossed.
      Also am looking at starting GLA:D exercise program designed especially for knee and hip arthritis in Denmark... Results shown great success but again further costs for me.
      I am frustrated about my physical restrictions as I have always been a reasonably agile person ... Not super fit but pretty ok for female in early 60's... walking any great distance now is a nightmare...as is a supermarket trip or shopping centre. And from bounding up and down my stairs at home it has become a daily struggle. I want to play golf again, be able to walk those endless miles one does when you go on holiday. I am hopeful... Won't let this get the better of me.
      Good luck Don, Tony and others.
      I'll give you updates ... Positive ones hopefully,
      Cheers... Gail (Melbourne)

      Delete
    2. Best of luck Gail! Cheers!

      Delete
  16. Hey Don... just been wondering how are you feeling now after completing your course of injections??
    Hope you’ve had positive results?? 😊

    ReplyDelete
  17. I've finished the injections without any major issues. I had some minor bruising around the site of the last 4 which makes me wonder whether the blood thinning effect is cumulative and hence the bruising. But otherwise, no problems. Sometimes the injection site is bit tender for an hour or two but it's certainly no major.
    The last injection was last Friday and the improvement is still about the same as I mentioned in my last post. So now it's a matter of waiting to see if there's any further improvement and whether the improvement is permanent.
    I see that Paradigm's drug trial requires a second MRI to be conducted about 6 weeks after the end of the treatment, so I'm assuming that's about when they expect the maximum improvement to be showing, so I'll report back after that. That'll be about the end of August for me.
    It would be interesting to have that "post-treatment" MRI carried out - just so I could see if there's any physical changes from the pre-treatment one I had done - but I can't justify that expenditure when there's no one actually going to look at it.

    ReplyDelete
    Replies
    1. Hello again Don..well am heading off for my 10th injection this morning..and yes I've noticed last couple of injections have left a mark and some degree of brushing for a little longer and increased irritation.
      As for improvements.. Yes maybe somewhat.. ??? Sensations and feelings within knee joint still seem to be a big difference.. Hard to describe... maybe I have been expecting too much??
      Think I looked at the clip of Greg Wiilaims to AFL footballer playing tennis too many times..doubt if I'll get there.
      I will have MRi at end.. As I have to return to Sports Med Physician for assessment ..I will report back.
      I am also going to try build muscle strength round joint with the exercise program as I think that has a lot to do with it too.
      Hope you continue to improve.
      Cheers... Gail

      Delete
    2. That's bruising not brushing.. Lol

      Delete
  18. I seem to have good days and bad days. Sometimes I'm quite sure there's been significant improvement - others not so much. Having a bad day today with knees quite sore. Steps seem to cause most problems and there's only a little improvement there, if any. Flat ground, and just walking around the house, are when I feel most improved. Still, even if that's all I get, it's worthwhile. And I'm only 2 weeks today from my last injection.

    ReplyDelete
  19. Hi Gail and Don,
    Can I just ask you how often you need to have the injections of it and for how long? Do you have to go back to your GP each time to have them?
    My mum and I have both been using the nasal spray, I think its done a little, but I cant help but wonder if injections would be better....

    ReplyDelete
    Replies
    1. Hi! I've had the injections the same as Paradigm Pharmaceuticals are using for their drug trial. That is, 2 a week for 6 weeks for a total of 12 injections. I chose to get my GP or her nurse to give them to me (because I'm a sook!) but if you're OK about doing them yourself I gather that's OK - and there's nothing complicated about it. As to whether they're better than the nasal spray I don't see why they should be but who knows. It is what Paradigm are trialing so I suppose they think it's best, but that may just be because potentially that may be the best way for them to make money from it. (There speaks a cycnic! (grin!)) Cheers!

      Delete
  20. Hi all....hope you continue to improve Don. And Yummy Mummy I didn’t even know there was a nose spray available till I read this blog. I’d give the injections a go if you have the spare funds. Don..were your injections from Paradigm??
    Well that’s me now completed the 12 injections. Still no miracle cure unfortunately ☹️... but am sure there is an improvement overall... actually last 10days or so haven’t felt great but that also may be due to a head cold and feeling less than ordinary.
    Although in speaking to nurses who have been giving me injections I can still expect improvements within the next six weeks. That is why you have the MRI at post 6 weeks final injection and also visit with sports med doc. So am still trying to feel as positive as I can.
    They did blood tests on Friday to check LFT, FBE etc.
    It has been a fairly expensive process but if I hadn’t done it when given the opportunity I would always have questioned it and wondered. No side effects except the bit of irritation and bruising at injection site.
    I also have now completed 2 weeks of the GLA:D exercise programme and am feeling pretty good whilst doing it and afterwards feel more knee flexibility... the Physio I’m doing it with is fantastic which is a huge bonus.
    I think one of the killers in my life and day still is sitting most of the day at work and end of the day my knees are stiff and agony.
    Maybe that’s telling me something but am just not ready to retire would like to last another 2years.
    I refuse to let this get the better of me...
    Best wishes everyone ��

    ReplyDelete
    Replies
    1. No, my injections were not from Paradigm. They refused to supply them for me saying I didn't meet the "risk profile" for the trial. Apparently because I have arteriosclerosis and have had some stents fitted. Luckily I was able to get the injections from Complementary Compounding Services in Ballina.
      And although a miracle cure would have been nice I have had a significant improvement in pain levels and think the treatment has been worthwhile.
      Hang in there!

      Delete
    2. That’s good to know then that Paradigm don’t have monopoly of the market then.
      And...Good to hear improvement in pain levels for you too. I try to remain positive as always :-))

      Delete
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  22. Hi Tony!

    Sounds like a good improvement for your hip. How's the knees? Any permanent improvement there? Presumably if your hip allows you to walk/stand straighter that could help the knee pain?

    ReplyDelete
    Replies
    1. touching wood - knees are OK. Left knee - the operation side - is sore - because the muscles got stretched and pulled so much and it has to get used to walking with a new hip

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    2. Fingers crossed for you! Cheers!

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