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 2017Filled 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 2017Another 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 2017Another 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 2017Another 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 2017Missed 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 2017Another 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 2017Less 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 2017Interim 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 2017The 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 2017I 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 2018Some 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 2018I 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 2018Went 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 2018Might 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 2018The 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 2018Read 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.
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Cheers thanks & goodonya