Anyone with PMR progressed to RA?

[JanetGarrettN]

Hello, Have been dealing with PMR diagnosed at 55 2 years 9 months ago. Over all things going pretty well, in this department, until recently. Tapered successfully and slowly from 17 mg Prednisone Nov. 2017 to 3.5 mg June 17. Taper has been drawn out due to other health issues and surgeries.

10 days later, started with increasing pain of back, thighs and knees. Bedtime dose of Tramodol, chiroproctor and ice did not abate. Felt like I had been kicked in the body by a horse all over. Struggled along with an on responsive rheumatologist for another couple of weeks until tele health appointment July 16. Advised to raise Prednisone to 10 mg for 2 wks. Started to feel some ease and 3 days and then wham so much worse. Pain in hands, wrists, fingers ankles also (symmetrical.) Again no response so I raised Pred to 15mg. During this time have tried 3 different muscle relaxers with more side effects than a relief. Have been extremely ill and during this time believe it or not job searching.

This rheumatologist has been pushing DMards from day one one. I have held our off. She now believes my PMR has morphed into or added RA based on my mother has EA, no pain just deformed fingers and toes, and my symptoms. Once a second opinion from a colleague of hers who is not available until January of 2021. I have been diagnosed with fibromyalgia since 1997 and believe it could be that also. I am at a loss as to how to get this under control. As up today 2 weeks since the initial increase to 15 I have taper down to 12 mg. How do I get back closer to the 3.5mg or where should I aim? Thank you for reading this long post. The Pandemic has certainly presented difficultly in seeing Drs. FYI my Rheumy is a young female, practicing 8 to 10 years, who does not buy the newer research on PMR and treatment and I believe still doubts my PMR based strictly on my age (not diagnosing Rheumy.)

Take care, stay safe.

Janet in Virginia

[PMRpro Ambassador]

Quite a high proportion of cases initially diagnosed as PMR have the diagnosis revised at some later stage. Some are GCA, but many are some form of inflammatory arthritis or something else altogether.

I'm always a bit suspicious of young doctors who want to remain in the past. And while I know we bang a drum here - ones who dismiss PMR as unworthy of their attention are also not amongst my favourites And the ones who don't agree with world experts need to have plenty to back their opinions.

[JanetGarrettN in reply to PMRpro]

I actually said to my mother this morning I can be sure that our receive timely with dependable responses from around the world in my PMR group than from my Rheumatologist 10 miles down the road. Sad. Thank you. Honestly it has been a pretty rough day. More than anything I am just confused, was it never PMR, is it now PMR now plus RA? I have continued to read on the subject the treatments and am scared to death for a variety of reasons. I try to ignore the pain that is literally surfacing today even at 12mg . The fronts of my shoulders, elbows, wrists, hands and fingers. Seems to be a mixture of symptoms? Slim pickings on Rheumys with December 10th first telehealth appt. I feel like I have hit a brick wall and am tumbling not sure what to do. Does anyone with PMR have other symptoms of hands, arms, elbows and feet that they say are indicate of RA? I'm not looking to jump to DMards but frankly am scared.

[PMRpro Ambassador in reply to JanetGarrettN]

What sort of symptoms there? I had hand/wrist and foot problems originally but once on the pred at 15mg they faded over the following few months. It wasn't immediate as it was mainly tendonitis and that can be slow to resolve. One not unusual thing that superficially can appear identical to PMR are the spondyloarthropathies

webmd.com/arthritis/psoriat...

I know a few who have been found to have ankylosing spondylitis after an intial diagnosis of PMR - and one even had GCA symptoms that fooled Prof Dasgupta! But another rheumy we often mention here heard her speak about night time back pain - which is typical of ankylosing spondylitis when it is earlier than about 2-3am. It doesn't present entirely typically in older women - but contrary to a common myth it doesn't only happen in younger males!

[SheffieldJane]

Hi Janet!

I am sorry to hear that you are having such a horrible time with a Rheumatologist who is so narrow in her outlook. I suppose that you have already looked into changing doctors? Yours seems to be doing more harm than good - particularly with regard to your morale. Do you agree with her RA assessment? I would be researching like mad and exploring the RA websites and Health Unlocked. I hope that you find a solution very soon.

[JanetGarrettN in reply to SheffieldJane]

Good evening,

Please see my response above to PMRPro to start with. This RA idea/suggestion has come on quickly with no detailed conversation other than she wants me to see a colleague for a second opinion on her diagnosis which is not until December 10th. Her actual colleague wasn't available till mid January so I went with someone else on the same team.

As I mentioned initially, she has pushed DMards from the beginning to help get down on the Prednisone though I think I've done pretty well all challenges considered from other health issues. I think I feel like things are just spiraling out of control health wise and I am scared. I am supposed to be starting a new job in the next couple weeks I lost my job 9 weeks this week due to Pandemic. 2 years and 9 months in, I'm just confused whether it's/was ever PMR or now plus RA? On the 12MG today I just feel pain leaching out of my body that wasn't there yesterday. Can't believe I had been down to 3.5 and been OK this 1st 6 months of the year. I guess I'm just scared it's me I'm divorced I'll be 58 this month and I have no choice but to work. Thanks for listening. Janet

[SheffieldJane in reply to JanetGarrettN]

I feel that I know you from 2-3 years ago as a member on here. Is that right, or am I mixing you up?

[JanetGarrettN in reply to SheffieldJane]

You are correct. I've been through alot of non PMR issues in the last 18 months, 3 eye surgeries due to torn detached retina that hasn't gone well or resolved yet and a big pelvic surgery at Christmas.

[SheffieldJane in reply to JanetGarrettN]

Sorry you are back but nice to see you, if that makes sense.

[helixhelix]

Well I seem to be going the other way! Diagnosed with RA 10 years ago (at 50’ish) and now showing symptoms that could be PMR.

Basically DMARDs saved my life. No, I didn’t want to take them - who does?! But I’ve been living a 95% normal life because of them. So don’t assume they are evil....

I live in dread of being told I will have to take pred as it turns me into a nut job. Give me DMARDs any day!

[JanetGarrettN in reply to helixhelix]

The grass is always greener isn't it?🤔 I really appreciate your answering we should talk. Are you located in the States? During my 2 years and 9 months on Prednisone, from17mg down to 3.5mg until this debacle, I believe I have mastered the blood sugar, diabetes and weight gain issues using the Ketogenic diet. I lost 30 lbs. and brought my A1C to 5.2- 5.4. Janet

[SheffieldJane in reply to JanetGarrettN]

That is pretty impressive Janet. I need to do the same.

[JanetGarrettN in reply to SheffieldJane]

If you're referring to the results and the Keto, yes my doctors are beyond happy say "no one loses weight on Prednisone. You should write a book." Now if only I could handle all of this as precisely.

[Constance13 in reply to JanetGarrettN]

Not true! Several people lose weight on Pred - me included (10 - 12 kilos).

I have taken a dmard all through my PMR life (8 years) as I also have aggressive polyarthritis.

[helixhelix in reply to JanetGarrettN]

I live in France, so several time zones away.

[cass24 in reply to JanetGarrettN]

Just wanted to add to what helixhelix has said... I was initially suspected of having PMR but that was fairly quickly revised to RA once I got to see the consultant. It was quite a shock at first and like most people, I was very reluctant to take start taking DMARDS but 8 months later, they've made such a huge difference (with side effects not nearly as bad as I feared) and I really don't like to think where I would be without them.

I know it's scary but please try not to panic too much. If it does turn out that you have RA, it really may not be as bad as you think and lots of people find they can live a (relatively) normal life especially once they've found a drugs regime which works for them. (If you haven't already done so, maybe also worth checking out the NRAS forum here for additional advice/support/reassurance?)

Wishing you all the best and very much hope you starting getting on top of things one way or another very soon.

[JanetGarrettN in reply to cass24]

Thank you.

[JanetGarrettN]

Wow. I'm not sure I know what reactive arthritis means? I'm sorry you have had so many things to deal with.

[JanetGarrettN]

Thanks for the link. That looks very complicated. I am familiar with NORD as my mother also has a rare disease, MSA Multiple System Atrophy, an ugly disease that attacks the autonomic nervous system. Have you used DMards in addition to Prednisone?

[JanetGarrettN]

Some good news.