Is this my PMR or am I now suffering from arthritis - PMRGCAuk

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Is this my PMR or am I now suffering from arthritis

Tiny_Tim
Tiny_Tim

I have been on Pred for just over three years and with some difficulty got down to 5 mg .All was going quite well for several months though i was not entirely pain free.( I don’t think I have ever suffered as badly as some ).I did start to notice pain in the joints of my thumbs , but at 80 I thought this was pretty normal. However over the past few weeks I have become increasingly wracked with pain and feeling exhausted .I do my walk every day under current restrictions, but feel pretty worried that I may be looking to further problems with arthritis which has maybe been masked by the higher doses of pred earlier on.

tiny-tim

39 Replies
oldestnewest

You maybe right. I have both conditions as well. Painkillers offer some relief from arthritic pain. What does your doctor think? I don’t like the sound of “ wracked with pain”. This needs some investigation.

well just now it is almost impossible to get a Dr’s appointment , and to be fair whilst this is a painful business I don't feel justified in taking up an appointment when others are probably in far greater need .

I had a very restful quiet day yesterday and took two doses of painkillers plus bumped up my steroid intake , and have woken feeling a bit better .

tiny-tim

I am glad you’ve woken feeling better. Jinasc recommends FlexiQ a cream that you rub in. I found it surprisingly effective for something not full of nasties. It is available on-line.

maria40
maria40 in reply to Tiny_Tim

I was given some very good exercises by a physiotherapist. The pain - and it is an awful pain I agree - does not vanish but has been significantly ameliorated. I think you can find similar exercises online and they might help until it is all right to see the GP.

DorsetLady
DorsetLadyPMRGCAuk volunteer

Hi,

Could be resurgence of arthritis - but as Jane says it may need further investigation as and when. Meanwhile this is a good site for info - versusarthritis.org/news/20...

Tiny_Tim
Tiny_Tim in reply to DorsetLady

thank you .I have looked up the site you recommended and have already done a trial of the hand exercises .

tiny-tim

maria40
maria40 in reply to Tiny_Tim

Sorry, missed this before I sent my reply above.

nuigini
nuigini in reply to Tiny_Tim

I'm 71 and have been diagnosed with osteoarthritis at the base of my thumbs, knees, shoulders and back, which acts up from time to time. Targeted exercise is my first go-to to relieve the pain. I was able to buy FlexiQ on line and it's pretty amazing.

X-rays and relevant investigations are in order when you are able to sound like a good plan.

Did you have arthritis before PMR came along?

Methotextrate is one of the gold standard treatment for RA and LORA (late Onset RA)

I know it is also used as a steroid sparing agent...............but perhaps you need it now for the RA. I would discuss this with your GP - you should ask for a telephone appointment and tell them everything about the pain etc..............in fact write down your symptoms and questions so you do not forget any and tick them off as you ask them. I do this when I have an appointment as I find when talking and they answer - you can get side tracked and forget something or other and then when you get home or put the telephone back down - I can end the appt or telephone conversation and then 'Oh I missed that one'.

Tiny_Tim
Tiny_Tim in reply to jinasc

Just now almost impossible to get a Dr’s appointment . Did not have arthritis before PMR so this might be a flare . Have upped my pred in the hope it will calm things down again .

Tiny- tim

PMRpro
PMRproAmbassador

Pain at the base of my thumbs has always been a sure sign of a flare of the PMR for me. Absolutely no sign of OA that I know of. But the only way to know is x-rays and examination by a doctor.

mayoclinic.org/diseases-con...

Tiny_Tim
Tiny_Tim in reply to PMRpro

Thank you ..It may come to that when things have quietened down in hospitals

Tiny - tim

PMRpro
PMRproAmbassador in reply to Tiny_Tim

Apparently some non-Covid A&E sides of hospitals are empty now!

The only two things to try before seeing your doctor are:

NSAIDs (ibuprophen, etc.) that will have some effect if it is OA.

OR

Up your pred for a few days. If it really helps, it is likely PMR related.

Hope your pain goes soon!

yes I wondered about ibuprofen but was not sure it was ok to take alongside steroids

I try hard not to take painkillers but did resort to a couple of doses of paracetamol yesterday ...Not as effective as co - codamol but I am aware of danger of getting hooked on that

Tiny-tim

PMRpro
PMRproAmbassador in reply to Tiny_Tim

It isn't recommended to take any NSAIDs alongside pred - paracetamol is least worse, cocodamol is OK with care to avoid consipation and getting too dependent on using it. If you do try more than the odd dose of an NSAID then it should be while also using a PPI or other stomach protection.

To me it sounds like the inflammation has built up and is letting you know. I agree with advice to try panadol and if that doesn't help up the pred a bit. I was stuck on 6mg pred for 6 months, from July 2018 to December 2018 so rheumy decided I needed to add Methotextrate and with that in 18 months I've got down to 1. If aches increase, I still try the panadol then up pred for a day or so then try to get back to 1. First diagnosed July 2017.

I had mild knee pain prior to PMR, with the higher doses of pred knee pain was negligible, 3 yrs later stuck on 6.5 and knee pain back with a vengence, knee CAT scan showed osteo arthritis in both knees. GP prescribed a NSAID daily and Panadol osteo x2 times daily, by end of the first week I was soooo much better. Saw Rheumy 2 wks later he suggested Panadol osteo x 3 times daily and the NSAID only for severe pain. Then gave me an alternating daily regimen to reduce pred to 5mg in 3 mths(June)! I was very sceptical as I had been stuck at 6.5 for 12 mths! Well lo and behold its mid May I have 1 more week at 5.5/ 5 before I am on 5mg. My knee pain is up abit as we are having a very cold spell but haven't had to have any NSAID. I'm not wanting to jinx myself but this taper has been easier than I anticipated.

But I must say it is sometimes hard to identify what pain is from which disease when you have a couple with similar symptoms. Might stay on 5mg a while before the next taper.

Hi Tiny Tim,

I was fine for about the first 18 months on pred but then, I became increasingly stiff and could hardly walk. I felt as though the pred had simply stopped working. In desperation I finally went to a rheumatologist who thinks I have inflammatory arthritis with PMR overlaying it (very common apparently). He put me onto a slow release anti inflammatory - I am a new woman! My stiffness is almost gone and apart from aching, often in the night just before morning, when the inflammation is most active, I very rarely feel any pain. I have had PMR for three years. I am slowly tapering (using the DSNS method) and am currently taking 7 mgs of pred per day. I am 70.

All the very best in your PMR journey.

Thank you

Hi Tiny_Tim, I do have arthritis in various joints. I am now down to 3mg and the arthritis has got more painful. I have been taking an antiinflammatory drug together with a PPI and painkillers which have been prescribed via telephone consultations with both my GP and rheumy. I know I am lucky in that all my medical team talk to each other and me.

I would urge you to contact your GP and book a telephone consult. This is how most GPs are working.

My friend recently had a bad case of renal colic and I had to talk him into contacting GP and then go to hospital as requested by GP. He said that he was seen very quickly and kept away from any suspected covid. They have all set up triage to make sure people with other conditions are kept separately. He got sent to the ward very quickly, scanned (found kidney stone) given medication and sent home within 6 hours! The hospital was really quiet whereas normally it is heaving.

Guess what I am saying is that if your GP wants to send you for xrays etc don't be too worried as hospitals are doing their utmost to avoid cross contamination. His nurse told him that she thought it was safer to visit the hospital than to go to the supermarket! My friend is glad he went and the stone eventually passed.

Hope your pain gets better soon x

I have had the same trouble. It is hard to tell the difference. Don’t laugh but I take two alka seltzer before bed and when I wake up my pain is reduced. Maybe just me but may be worth a try. Can’t hurt ! I hate taking medicine. Prednisone causes me to bruise easily and I am active so it shows.

PMRpro
PMRproAmbassador in reply to Scarter770

I'm sure the aspirin in alkaseltzer helps!!

My pains turned out to be osteoarthritis that had been developing over the years, masked by the prednisone for my PMR. It makes me miss the higher dose Pred days. I’m at 2mg per day in this my 5th year of PMR.

I have arthritis at the base of my thumbs. Many fingers (I got the bumpy finger nodes). Both hips. Plus at the site of an old serious ankle injury. All verified by x-ray and my rheumy.

I cope for now with occasional ibuprofen, heat, hip stretches I learned from watching a YouTube video from a pair of physical therapists, and occasional CBD oil taken under the tongue. If I keep active things settle down well enough most days. Rainy days are the worst though, with the extra bonus of migraines.

Hidden
Hidden in reply to SusanEleven

Humidity is a key factor in my arthritis flaring. I sympathise. I am at 7mg and the arthritis is kicking my pain in my hands, particularly thumbs. I find ice works better when in full flare. But if it's just that background hum I will put my hands in warm to hot water for as long as I can stand up. I do have neoprene gloves that are good when on but getting them off is a pain!

SusanEleven
SusanEleven in reply to Hidden

The humidity is such a trigger, plus it can kick off my weather migraines. Extra pain bonus blah.

I’ll try ice and see how it goes. I like trying different approaches. I got a pair of arthritis gloves to try as well.

jinasc
jinasc in reply to SusanEleven

Susan11

Without Flexiseq I don't know how I would walk with Osteo in both knees - it also works on hands, which I ddiscovered when sitting waiting for the 10 minutes to pass. A lady I know, was able to knit after ten years of no knitting...........she had also found the 10 minutes waiting and was so excited as she was able to knit a baby shawl for her grandchild, previous grandchildren missed out.

Flexiseq is a bio-mechanical gel....................works like WD40. BTW is was developed by ARC in conjunction with others.

Hidden
Hidden in reply to jinasc

Yes I tried it years ago. It did help my knees and I tol found it helped other joints in my hands. But sadly it's beyond my purse to buy it regularly, though I pased it in to my sister who does use it. I do find the idea if it being "nanoparticles" that grease the wheels of the joints fascinating. I haven't tried to get it on prescription, maybe I will.

jinasc
jinasc in reply to Hidden

I hope you can, but when I tried both Rheumy and GP it was a no no.

I wish it was available on prescription.................it is expensive but keep an eye out on Lloyds and also the big A. I dod find out I need less than the index finger length.

I did ask ARC Research about prescription just after it was announced..................I remember they replied.............but I don't have a record of the reply.

Hidden
Hidden in reply to jinasc

And now I just ordered some. 😂😂😂 Amazing what a sleepless night with hand pain will do!!!

jinasc
jinasc in reply to Hidden

We were both typing at the same time.

I meant to tell you that after a couple of weeks with being woken up with agony in the joint at top of right leg. I thought try it.................I ended up laughing my head off, as I struggled to get into the right position to feel the bone and nearly fell off the bed.............luckily I managed to grab the head rail - put the Flexi on and waited the 10 minutes. It worked, so another joint (no not beef) added.

Hidden
Hidden in reply to jinasc

🤣😂🤣 I have ordered the active version that is a bigger amount and recommends for neck etc which will help. To be honest it was cheap compared to what I paid before. 12.99 for the 50mg tube.

jinasc
jinasc in reply to Hidden

Send me a PM of where....................I paid £16.99 for the last lot.

Hidden
Hidden in reply to jinasc

The big A

jinasc
jinasc in reply to Hidden

Yippee, I got some - ta👍👍👍 muchly.

SusanEleven
SusanEleven in reply to jinasc

I did try it last year (I’m in the US and got it shipped from the UK) and it didn’t work for me. Our bodies are so individual in what they will respond to (and how they respond) so I always go in with an open mind and appreciate suggestions.

My discoveries through the years include Tylenol/paracetamol does zero for me as far as pain, unless it’s tylenol with codeine. Any other serious prescription painkillers won’t stay down in my stomach ever. There’s an antihistamine I tried for my allergies that turns me pink and itchy! Never a dull moment.

jinasc
jinasc in reply to SusanEleven

Oh that is a shame, you are only the second person who has told me it did not work for them.............trust us humans.........all completely different, even those who have Viking Ancestors. 😉

Hidden
Hidden in reply to SusanEleven

I take tramadol for other issues and that sometimes helps but not as much as people think for all pain. I took paracetamol in the night when for some reason, and a new area of knuckle pain emerged. The pattern seems to be it gets worse then settles for s while so had to order nsaid too just to give it a blast if still swollen and painful tomorrow.

Even after 20yrs if different health issues, my body still throws me surprises. 😵😁

Sorry to read of your problems Tim, not nice getting old is it ? PMR is such a painful disease but pain should go away while on prednisone, so could be arthritis you're experiencing too. I feel quite lucky when I read some of the ladies posts, so many are far worse off than I and am thankful for that.

Anne

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