A Flare or Osteoarthritis?

[Swizzly]

I have problems understanding. I did not feel well when reducing from 10 mg to 8.75. The pain came back at night in my knee with osteoarthritis. My blood test yesterday showed no increase in inflammation levels. I have increased to 11.25 for three days. How is it possible to get pain again without inflammation values?

Is the osteoarthritis to blame and Pred does not help? I started with 20mg in April this year.

Thanks for help.

PS: in Switzerland the lowest tablet is 5mg to cut in 4 bits also 1.25. it is not possible to cut that tiny little bit in half again.

[PMRpro Ambassador]

When you can't do small changes in dose because of the size of the tablets, then it helps to use one of our slowed tapers which you will find under Tapering in the FAQs. Using those you would only reduce the dose on one day in the week at first, then introduce 2 days of the new dose and so on and you can repeat any stage as many times as you like to ease into the new lower dose slowly.

It can take up to weeks for increasing inflammation to trigger the liver to release the proteins that cause the markers to rise. There has to be enough inflammation present for long enough to do it. In some people, that doesn't happen when they are still on pred at any dose.

OA often doesn't result in raised markers but pred can relieve the inflammation and pain in OA at higher doses - and at some point it isn't enough. Have you tried topical creams such as diclofenac/Voltarol on the knee to see if that helps - which would suggest it is OA? Another helpful product for OA is called Flexisec - actually a German product but possibly available through Amazon if the pharmacy cannot obtain it for you. It is listed by Italian online pharmacies.

flexiseq.com/

[Swizzly in reply to PMRpro]

Dear PMRpro

Thank you for the quick reply. I really appreciate this forum.

That's true. I had no problems with my knee over 10mg Pred. I already had OA before PMR, which is why I know this type of pain.

I completely forgot to take a cream like Voltaren or something. I thought Pred would help also. I'll give it a try.

Thank you🌸

[DorsetLady PMRGCAuk volunteer in reply to Swizzly]

High doses of Pred can certainly "hide" OA pain, my GCA ones did.. but then they cover up many things.

Like you I had OA previously, and the pains returned as I got to low teens of Pred. I used ibuprofen gel sometimes [although not orally] - and am an advocate of Flexiseq - PMRpro has given link - so give it a try. And Flexiseq have a contract with that well-know online mega store beginning with A... although not sure it's available everywhere that way - but worth looking.

[Swizzly in reply to DorsetLady]

Your knowledge about this disease is so helpful 🍀

I am just studying your slow taperplan. I try it with my old dose of 8.25 and the dose before of 10.

[DorsetLady PMRGCAuk volunteer in reply to Swizzly]

If necessary you can use the ultra slow one.....

[PMRpro Ambassador in reply to DorsetLady]

I got Italian links from the Big A and from online pharmacies

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Yes saw that - hopefully it works in Switzerland too..

[Swizzly in reply to DorsetLady]

Hm Flexiseq is not avaiable in CH, D and AT

[Highlandtiger in reply to Swizzly]

Their website suggests it is available in Germany and Austria at least. Might be worth contacting them direct though the website to ask who their suppliers are there?

PS You need to click on the pic to see the bit I mean which is at the bottom.

Flexiseq FAQs

[Swizzly in reply to Highlandtiger]

Thanks for help Highlandtiger

[PMRpro Ambassador in reply to Swizzly]

You can get it from a pharmacy in Germany - because I asked but they would have had to order it and I wasn't there long enough.

[Swizzly in reply to PMRpro]

Thanks a lot for the info. I live close to the border with Germany. So i will go to a pharmacy next time.

[PMRpro Ambassador in reply to Swizzly]

At least you SHOULD be able to but who knows in reality!!!!

[Broseley in reply to Swizzly]

I got Flexiseq here in the UK from Amazon. You can also buy it directly from their website. The only problem I found is that you don't rub it in, you have to let it dry for 10 minutes. In our cold house that's really not nice!

I had persistent knee pain recently which the rheumatologist said was OA. I asked for an XRay which showed only mild arthritis. Flexiseq helped, but Voltarol was better.

Eventually my hip 'went' which totally crippled me. I upped my pred by 5mg and not only did the hip miraculously get better, so did my knee! I only took 5mg for 4 days then went back to half mg. But the knee pain never returned. That was 3 months ago.

[HeronNS]

FYI I usually get Flexiseq via my son's Prime A account in Canada, but he was able to get a larger size from elsewhere last time. It was a company called Vivomed, which seems to have worldwide shipping like the big A.

vivomed.com

Make sure, if you decide to try Flexiseq, that you order the kind for arthritis, Flexiseq Max. There is another version which is designed for temporary conditions like recovery from injury or something like knee pain from running, not chronic pain from arthritis.

[Swizzly in reply to HeronNS]

Thank you HeronNS

Unfortunately vivomed has Flexiseq not in stock actually. I have noticed that most internet shops hasn‘t the gel anymore to buy.

[HeronNS]

That does happen sometimes. Click the notify me button so they'll let you know if/when it's back in stock. Amazon may have same option if it's not available right now.

I think the reason this product is not more readily available is because for many countries (like Canada and perhaps Switzerland) they have to jump through so many hoops with the health department to get authorised it simply isn't worth it to the company.

[Swizzly in reply to HeronNS]

Probably because the gel is drug free and made with nano technology.

Have a nice Sunday HeronNS.

[Zebedee44]

Paracetomol or its equivalent can also reduce random pain that is not caused by your PMR. You can safely take up to 8 tablets a day.

[PMRpro Ambassador in reply to Zebedee44]

"You can safely take up to 8 tablets a day."

Possibly but less likely as you age and depending on what other medication you take that is processed by the liver. One lady on this forum was persuaded she would be safer and better swapping a few mg pred for paracetamol. A few weeks later she had a routine blood test where her liver enzymes were so high her GP panicked and sent her for an urgent liver ultrasound. Nothing to be found - and the radiographer said it was common. They dished out "safe paracetamol" and then the enzymes went haywire. She went back to the low dose of pred that was working extremely well and all was well with her liver.

[Hopelessatbest]

I have severe knee OA (end stage) in both knees. When on 15mg pred I could easily get out of a chair and from bed in the mornings. Now I am on 2.5 mg pred and struggle with both and require a stick to help me get out of bed. So yes, the pred does dull down the OA pain considerably and now it is a return to normality with severe OA. No over the counter meds help my OA.

[PMRpro Ambassador in reply to Hopelessatbest]

If that was me - in the absence of a TKRx2 I'd be upping the pred!!!

[Hopelessatbest in reply to PMRpro]

It has taken me from April 2023 at 15 mg to get down to 2.5mg and not without a great deal of determination. I have to see a private Consultant about a potential heart issue soon and hope to be off pred within two years.

[PMRpro Ambassador in reply to Hopelessatbest]

I do appreciate that. However, the goal with pred in PMR is not to get to zero pred but the lowest effective dose, the lowest dose that allows the same symptom relief that the original starting dose did and to maintain an optimal quality of life. You have tapered the pred relatively fast - half of patients take up to 18 months to get from 15 to 5mg, that means half take longer. You are ahead of that curve. But getting off pred doesn't follow a calendar, it depends on the underlying autoimmune disorder having burned out and gone into remission. If you stop the pred before that happens, all that will happen is you end up back where you were originally as the unmanaged inflammation builds up again. Only about a third of patients fit into the 2 year myth - 40% of patients still need pred at 5 years.

Personally, a decent quality of life is more important to me than being totally off pred. And my cardiologist never complains about the pred dose - since it also modifies some of my symptoms there. Infinitely preferable to NSAIDs for pain relief too.

[Hopelessatbest in reply to PMRpro]

Thank you for replying. Food for thought. I will also wait to see what the Cardiologist says.

[DorsetLady PMRGCAuk volunteer in reply to Hopelessatbest]

Then is it all OA?

As PMRpro suggests maybe try upping Pred and see what happens..

[Hopelessatbest in reply to DorsetLady]

I think it is all OA . I was very bad and living on Naproxen before PMR struck. Don’t take Naproxen now, although I have it on prescription. No way am I going backwards with steroids when I have come this far. I am prepared to suffer to get off steroids.

[DorsetLady PMRGCAuk volunteer in reply to Hopelessatbest]

Okay - so long as it is OA…Do you use Flexiseq - or has it gone too far for that?

[Hopelessatbest in reply to DorsetLady]

Way too far for any otc meds. My Consultant said I was too far past steroid injections too. Had them just in case but of no use. I did have platelet treatment privately which helped but only for three months and the cost outweighed the duration of the feel better factor. I have all three knee compartments damaged on both knees and the ACL on the right leg along with mucoid degeneration and a cyst behind the left knee so totally not great. I have been waiting to get the knees done because I was helping my Mum who was 102 years old. Sadly she died at the end of July. In between PMR struck and a heart problem.

[DorsetLady PMRGCAuk volunteer in reply to Hopelessatbest]

Lot going on… no wonder you are struggling … do hope you can get some relief soon…🌸

[Hopelessatbest in reply to DorsetLady]

Thank you for your kind thoughts

[PMRpro Ambassador in reply to Hopelessatbest]

So sorry to hear about your mum - an amazing age but having had her so long makes it all the harder I'm sure.

[Hopelessatbest in reply to PMRpro]

Yes, she has been a huge loss to me. Mum was still sharp to the end. Thank you for your kind thoughts

[Hankb]

Hi Swizzy. I live in South Africa and had the same problem as you have ie not being able to get prednisone tablets smaller than 5mg and finding it difficult to cut them into quarters. I then found out from Mrs Nails on this forum that a liquid form of prednisone is available. I checked with my pharmacy and they were able to get the liquid form of pred which goes under the name of Aspelone here. I am currently on a dosage of 3mg and take half a tablet of prednisone and use a syringe dropper for the 0.5mg. to make up a total of 3mg. Hopefully this will solve your problem. Good luck

[Swizzly in reply to Hankb]

Thanks a lot Hankb and good luck to taper Pred.