PMR symptoms. Seronegative RA diagnosis. - PMRGCAuk

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PMR symptoms. Seronegative RA diagnosis.

JavaJay profile image
JavaJay

Hi all! I'm a 61yr old female, living in the states. This is my first post. I've been having debilitating pain and stiffness since September 2018. At first, I didn't know what was happening to me. I went from walking 5 miles a day to barely being able to get out of bed. My sister sent me an article about PMR, and that eventually led me to this forum. Thank you for sharing your expertise and experiences!

After bouncing between my GP, Orthopods, and finally a Rheumatologist, I was diagnosed this month with Seronegative RA.

This is based solely on the fact that in July 2018 my Rt knee suddenly (overnight) became stiff, swollen, warm, and painful. X-rays were negative for injury and arthritis. Fluid drawn was negative for infection and pseudo gout. Blood tests: GRP 2.4, SED rate: 36, RA Factor: Neg, ANA: Neg, Anti-CCP: 6 (within normal range 0-19)

Rheumy wouldn't consider PMR. Said it ONLY affects neck and shoulders. Never arms, hips, or thighs. Said when she saw my inflamed knee that was enough for an RA diagnosis. Test results and x-rays didn't matter. Told me to start on 10mg Prednisone and 15mg Methotrexate. I disagreed with the diagnosis, and told her I needed to learn more about MTX before I agreed to take it. I decided not to take the MTX. 10 Pred gave me about 40% relief in 3 days. I then tried 15 Pred. Within 6 hrs/overnight I woke up 90% pain free. Knee included! I stayed on 15 until my next appt...12 blissful days later. She was livid. Said I wasted 2wks on 15 Pred when I should have been on the MTX. Didn't care how well I was feeling. Gave me a final script for (60tabs) 5mg Pred, and told me to be off pred and on MTX by my next appt in a month. Said "You want this to be PMR so it will go away instead of having RA for life." And "Stop reading medical material on the internet!" Needless to say I won't be going back. I have since found out that she has a very poor approval rating with other patients. No wonder why...

I'm now on a 3-6mo wait-list to see a new Rheumy. GP has agreed to prescribe 10mg daily Pred until then. He has treated only 2 cases of PMR in 20 yrs of practice. I've reduced to 11.5 so far. Having some mild overnight stiffness, that goes away fairly quickly once I'm up and about. GP has suggested that I give the MTX a try and see what happens. So that when I see the new Rheumy, I can say I've tried it, and that might possibly eliminate a variable for a PMR diagnosis.

Question. Would any of you take Methotrexate as a trial, even though you felt deep down inside that you don't have RA?

As a side note, my PMR symptoms began within days of getting a flu shot in early September. Coincidence? This was on top of 4 plus years of stress, watching my Mom spiral down with dementia, and currently overseeing her care in a nursing home.

If you've made it this far, I apologise for being so long-winded, and thank you for any input you might want to provide.

Be well,

Jayne

61 Replies

That is some story. What crappy doctors you have!😟

Do try to get a new rheumatologist.

Our experts will be along soon and they will give you excellent advice. What they know about PMR (or can find out) is very often better than most of the rheumatologists who think MTX is the only way to treat PMR.

JavaJay profile image
JavaJay in reply to Constance13

I agree with you!

The symptoms suggest PMR as well as the response to 15 mg prednisone. see:

medicalnewstoday.com/articl...

"Polymyalgia rheumatica: What you need to know......................

One symptom is pain that can be worse in the morning with improvement throughout the day. This pain may make it difficult for people to get dressed at the start of the day. Raising their arms above the head to comb their hair can be challenging.

Another frequent symptom people have is stiffness in at least two areas. Commonly affected areas include the buttocks, hips, neck, thighs, upper arms, and shoulders.''

.................Medications used to treat PMR are referred to as anti-inflammatory drugs and include corticosteroids like prednisone.

During steroid treatment, the effect on inflammation is monitored with blood tests like ESR and C-reactive protein levels. Often, those being treated for PMR feel rapid improvement with steroid therapy. "

PMR2011 profile image
PMR2011 in reply to gifford7

Agreed, ditch that rheumatologist as fast as you can. Hogwash PMR only affects neck and shoulders. Many of us on the forum started with hips and knees. If it is PMR and you’ve managed greater than 70% relief with Pred, why bother with methotrexate? Lots of info on this site, particularly methods for tapering the Pred (slow and steady). GP’s do manage PMR but mostly we have to be our own best advocates. Hope you find a good doc who is familiar with the illness and listens to you!

JavaJay profile image
JavaJay in reply to gifford7

Thanks for the excellent article on PMR! Prior to taking Prednisone I had nearly all of those symptoms except (knock wood) the extreme tiredness. I had been sleeping on top of the bed covers because I couldn't turn over under the weight of the blankets. When turning the steering wheel on my car became increasingly difficult, I started to panic. I thought I might become housebound. Prednisone 15mg gave me my life back!

Okay Jayne, as usual lots of confusion which goes with the territory. Firstly DO NOT try tapering the Pred without having an effective medication in the mix. And don't be frightened of MTX. I have been on it twice, currently taking 25mgs a week and with my current situation it has been a life saver. Its always been a first line defense against RA. If your blood work came back seronegative for RA it doesn't mean you don't have RA, it means you have it to lesser extent than someone like me who is positive. Plus it takes MTX a while to get into your system so you can't be impatient.

PMR is a whole other issue and does typically start in the shoulders, upper arms. Unbelievably painful and debillitating. If you are - and it sounds like you are -- at the beginning of an RA diagnosis then you have an array of treatment options, all of which are very effective if they work for you. I was pain free for 14 years on one of them.

I can empathise with the situation you have with your mother. I lived through that particular nightmare with mine and I was living in the U.S going back and forth like a yo- yo for ten years. Fortunately I was medically stable at the time.

PMRpro profile image
PMRproAmbassador in reply to Laurapc

You do know you are on the PMRGCA forum? You may know about RA, I doubt you are aware of the full spectrum of PMR! The textbooks suggest PMR typically starts in the shoulders and arms but that is by no means true. Either that or an awful lot of us here don't have PMR. I had bicep pain and stiff shoulders, but they weren't excuciatingly painful - that was reserved for claudication pain in my thighs. I do NOT have RA, no sign of that at all after 14 years.

Currently the only option for PMR is pred and most of us manage and reduce pred while just on pred. It sounds as if Jayne is on an effective med for PMR - and her symptoms do sound as much PMR as they might sound to be RA.

Laurapc profile image
Laurapc in reply to PMRpro

Yes, I do know where I am and I came here deliberately because I was convinced I had PMR. I thought I had it in addition to RA. That may even be the case because It seems that RA and PMR mimic each other in many ways. When you suddenly find yourself unable to move with symptoms you have never experienced before, the natural inclination is to go looking for possible explanations. There is also a lot of discussion here about Prednisone and as I have been on that rollercoaster for two years it has been educational.

I guess I won’t find out if I have PMR until my new RA infusion (Rituximab), which starts end of January, starts to yield results and I try tapering the Prednisone again. Meanwhile, I am back up to 10mgs since yesterday - all my symptoms have reduced by about 60%.

JavaJay profile image
JavaJay in reply to Laurapc

Thanks for your reply! I feel I have PMR based on my symptoms. The Rheumatologist squeezed and mashed on just about every joint in my body. The only one that was inflamed was my knee. She told me on my first visit she was 95% sure I had RA. This was before I had any blood work done. I questioned that diagnosis then, and still do today.

I’m starting to realize our drs in US don’t know much about PMR! Sounds like pmr to me! I can’t imagine anyone telling you to take methotrexate, when prednisone works!

JavaJay profile image
JavaJay in reply to Bronni

I know right! I was hoping my GP would be more informed, but he said he thought PMR only affects the neck and shoulders also. He has treated 2 cases. He did say he remembers that one patient did report having difficulty raising her arms to style her hair.

Bronni profile image
Bronni in reply to JavaJay

Just discovered on this site that difficulty raising arms is a classic symptom. For me it started 4 yrs ago in my hip and knee and would switch sides! Unusual for pmr, but we are all different. Then progressed to my arm, before I started on pred. I have been pretty well ( normal) ever since and adjust my pred incrementally as needed( now at 2.5mg). My gp is a nervous Nellie, but keeps writing my scrips, so I’m fine with that!

Bronni profile image
Bronni in reply to Bronni

Forgot to mention that I dumped the first rheumie because he said he thought it was RA and laughed!!! I knew In my gut it wasn’t, so I left not to return. Also when I had problem with raising my arm, my hand was hot and swollen.

JavaJay profile image
JavaJay in reply to Bronni

Wow! What is up with some of these rheumatologists? I have that gut feeling also. Sounds like you are doing well on pred at 2.5. Funny how the symptoms can be so different with each person. 4 1/2 years seems an eternity to me at this early stage. This too shall pass!

I had almost exact experience with my former Rheumy. From the first appt she was suspicious of something other than PMR and threatened Methotrexate at all 3 meetings with her. I was negative for all the tests like you, so she said I could have Seronegative RA. I do have chronic knee issues which causes some swelling, but she didn’t ever check knee fluid. In the end I gave her the boot. She too was very bossy, condescending, and spit out conflicting, confusing info.

For your Rheumy to say PMR only affects the shoulders is ridiculous!! I’d get a new Rheumy and very slowly taper your pred dose while listening to your body/symptoms.

All the best to you moving forward!

JavaJay profile image
JavaJay in reply to PMRCanada

Oh my! Sounds like we might have seen the same Rheumatologist. I saw mine 3 times as well. Never have I been told by a doctor to ignore the pharmacy paperwork that comes with a prescription. In this case it was methotrexate.

PMRpro profile image
PMRproAmbassador

At least you aren't going back to her! What arrogance...

Without radiographical imaging confirmation or pretty conclusive sero results I would not accept a dx of RA on the basis of a single knee episode. It MIGHT be palindromic rheumatism - or it might be coincidence. But there isn't much evidence of anything more. And as for what PMR affects - these experts disagree with her:

academic.oup.com/rheumatolo...

Even if you can't read the text, Figure one is fairly clear about what is affected on PMR, LVV and GCA. My worst place was my thighs and biceps.

I have tried methotrexate because some doctors think it helps achieve a lower dose of pred (at the expense of another layer of side effects). I lasted a month before I couldn't stand the fatigue any more. But for RA it takes up to 6 months to have any effect and doesn't work for everyone. That isn't a test of any sort. So no, I wouldn't indulge her arrogance and would continue as you are.

JavaJay profile image
JavaJay in reply to PMRpro

Thanks for replying! Arrogance is an excellent choice of words. I thought my knee issue might be a coincidence as well. When I asked the Rheumatologist she laughed and said "What are the odds of that happening!" I'm more afraid of the side effects of Methotrexate than I am of Prednisone...if that's possible. I've only been on Prednisone for about 5 weeks. So far no noticable side effects. I have osteoporosis in my spine and hip, and have made peace with it. I took Fosamax years ago. Currently taking Calcium/VitD/VitK supplements. I've decided against the trial with methotrexate, and will be taking only prednisone going forward.

PMRpro profile image
PMRproAmbassador in reply to JavaJay

I had pain in my right knee with PMR, don't remember it being hot though. The first rheumy I saw because of the hand and wrist pain I also had, informed me the knee was due to osteoarthritis as she "could feel it". Earlier this year, some 13 years later, I again had some knee problems which were very similar and wondered if maybe it had progressed (not that i had been convinced she was right as it had gone once I was offered pred). This time I had an x-ray (they don't often guess here) - no sign of OA anywhere...

Please show me the proof...

JavaJay profile image
JavaJay in reply to PMRpro

The Rheumatologist could "feel" the synovial sac filled with fluid. That was the only problem joint I had. There was no other proof. That's how she labeled me as having Seronegative RA. The comment she made about my wanting this to be PMR still rings in my ears. I don't want to have any of this, but there's definitely something going on with me.

PMRpro profile image
PMRproAmbassador in reply to JavaJay

I'd be shopping around I think...

My dr. told me it is much better to give the methotrexate at the beginning of treatment

for pmr. For some reason it works better. Metho. does not treat the pmr it works in a way that allows us to reduce prednisone easier. I have been on metho. couldn't

take the pill form so I was on once a week injections. I went off of it because of the side effects, just couldn't take them any longer after 1 year. In that year, It did help me to get from 15 to 6mg, but I think it was too fast and caused a really bad flare.

Good luck with it all.

PMRpro profile image
PMRproAmbassador in reply to Linny3

That is said for GCA - to my knowledge there are no clinical trials for PMR.

Using a slow and steady approach to reducing it is perfectly possible to reduce without flares and achieve a low dose that manages the PMR - even without methotrexate.

JavaJay profile image
JavaJay in reply to Linny3

I'm still waiting for a proper diagnosis. The clinic I've been referred to has 4 Rheumatologists on staff. Hopefully one of them has some experience with PMR. In the meantime, I'm to reduce from 11.5 to 10mg of prednisone, as my GP is only comfortable prescribing the lower dose.

gifford7 profile image
gifford7 in reply to JavaJay

Perhaps refer your GP to the AFP [American Family Physician] guidelines for treating PMR which are starting dose of 15 mg/d prednisone. see

aafp.org/afp/2013/1115/p676...

"SORT: KEY RECOMMENDATIONS FOR PRACTICE

CLINICAL RECOMMENDATION-EVIDENCE RATING-REFERENCES-COMMENTS

----------------------------------------------------------------------------

Straightforward polymyalgia rheumatica should be treated with low-dose corticosteroids and a slow taper.

C

20, 24

Prednisone in a starting dosage of 15 mg per day is the consensus recommendation.

----------------------------------------------------------------------------

Medications should be instituted to decrease fracture risk in patients on high-dose, long-term glucocorticoid therapy.

B

30–32

Alendronate (Fosamax) and risedronate (Actonel) have been shown to increase bone mineral density and decrease vertebral fractures in patients on long-term glucocorticoid therapy.

-------------------------------------------------------------------------

Low-dose aspirin should be used as an adjunctive treatment to decrease the risk of ischemic events in patients with giant cell arteritis.

C

24, 48

-----------------------------------------------------------------------

There are no prospective trials of aspirin therapy, but its use is associated with a reduced risk of both stroke and visual loss.

------------------------------------------------------------------------

A = consistent, good-quality patient-oriented evidence; B = inconsistent or limited-quality patient-oriented evidence; C = consensus, disease-oriented evidence, usual practice, expert opinion, or case series. For information about the SORT evidence rating system, go to aafp.org/afpsort . "

-------------------------------------------------------------------

Also see

"Table 3.

BSR/BHPR Joint Treatment Guidelines for Polymyalgia Rheumatica

Standard initial treatment

Oral prednisone: 15 mg per day for three weeks, then 12.5 mg per day for three weeks, then 10 mg per day for four to six weeks, then decrease by 1 mg every four to eight weeks

Expect one to two years of treatment"

JavaJay profile image
JavaJay in reply to gifford7

Thank you for the link! It’s one I haven’t seen before. I will print it out and offer it to my GP. They tend to reject literature provided by patients. But it’s worth a shot!

gifford7 profile image
gifford7 in reply to JavaJay

Here is a more comprehensive link:

rheumatology.org/Portals/0/...

"2015 Recommendations for the Management of

Polymyalgia Rheumatica

A European League Against Rheumatism/American College of Rheumatology

Collaborative Initiative..............................

-------------------------------------------

D. Treatment of PMR patients should aim at the best care and must be based on a shared decision between the patient and the treating physician.

E. Patients should have an individualized PMR management plan. Patient perspective and preferences should be considered in the individualized

choice of initial GC dose and subsequent tapering of GCs in PMR.

F. Patients should have access to education focusing on the impact of PMR and treatment (including comorbidities and disease predictors) and advice

on individually tailored exercise programs.

G. Every patient treated for PMR in primary or secondary care should be monitored with the following assessments: risk factors and evidence for steroidrelated

side effects, comorbidities, other relevant medications, evidence and risk factors for relapse/prolonged therapy. Continuous documentation of a

minimal clinical and laboratory dataset should be conducted while prescribing GCs. Follow-up visits are suggested every 4–8 weeks in the first year,

every 8–12 weeks in the second year, and as indicated in case of relapse or as prednisone is tapered and discontinued..........................

3. The panel conditionally recommends using the minimum effective GC dose within a range of 12.5–25 mg prednisone equivalent daily as the initial

treatment of PMR. A higher initial prednisone dose within this range may be considered in patients with a high risk of relapse and low risk of

adverse events, whereas in patients with relevant comorbidities (eg, diabetes, osteoporosis, glaucoma, etc.) and other risk factors for GC-related side

effects, a lower dose may be preferred. The panel discourages conditionally the use of initial doses 7.5 mg/day and strongly recommends against

the use of initial doses 30 mg/day.

4. The panel strongly recommends individualizing dose tapering schedules, predicated to regular monitoring of patient disease activity, laboratory

markers and adverse events.The following principles of GC dose tapering are suggested:

A. Initial tapering: Taper dose to an oral dose of 10 mg/day prednisone equivalent within 4–8 weeks.

B. Relapse therapy: Increase oral prednisone to the pre-relapse dose and decrease it gradually (within 4–8 weeks) to the dose at which the relapse

occurred.

C. Tapering once remission is achieved (following initial and relapse therapies): Taper daily oral prednisone by 1 mg every 4 weeks (or by 1.25 mg

decrements using schedules such as 10/7.5 mg alternate days, etc.) until discontinuation given that remission is maintained."

JavaJay profile image
JavaJay in reply to gifford7

Thanks! Much appreciated!

Poor you! Your rheumy sounds like a nightmare. Glad you are going elsewhere. Can't your own doctor give you a higher dose of pred? Definitely sounds like PMR, especially since it have you done relief. As for it only affecting shoulders etc, why did I feel as if I had been kicked in the butt when I got out of a chair 🤔 Good luck and keep us updated.

JavaJay profile image
JavaJay in reply to Hollyseden

My GP is only comfortable prescribing the lower dose. However, I’m fairly confident that if 10 mg proves to be too low, and my symptoms come back with fury, he won’t leave me in misery. I could only sit in an arm chair because getting up was so difficult.

PMRpro profile image
PMRproAmbassador in reply to JavaJay

He needs to do some reading - you need a bit more to start with, not that long really, but then you reduce a bit to find the lowest dose. But unless you clear out the inflammation first it will be struggle to reduce - I do wish they could understand that.

I asked about a bigger dose because all the stuff I've read on here, recommends a starting dose of 15-30mg for about 6 weeks to mop up the inflammation before starting to taper down. Wonder if 10mg will be enough to do that? The aunties on here know best, better than most doctors and rheumies 🙄

JavaJay profile image
JavaJay in reply to Hollyseden

I wanted to stay on 15 for a few more weeks, then taper down very slowly, but my doctor is hesitant to treat without a confirmed diagnosis. He feels 10 is a good compromise. The stiffness and pain are slowly getting worse each morning, especially in my biceps and thighs. So I don’t think 10 is going to be enough either. I may have to go back up to 15 to head off a full blown relapse. And hopefully my doc will get onboard. It’s all turning into a nightmare!

PMRpro profile image
PMRproAmbassador in reply to JavaJay

"He feels 10 is a good compromise"

Then he needs to get his ideas together: it is only a good compromise if it is enough to manage the symptoms and it obviously isn't. If it isn't enough to manage each daily dose of inflammation, the leftovers will mount up and eventually you will be back at the beginning. You might as well not be on any - you'll just be immobile quicker. And in the meantime you have all the downsides of pred without any benefits to balance them out. It may even make it harder to get under control later.

Show him this:

rcpe.ac.uk/sites/default/fi...

It is a paper written to help GPs understand, diagnose and manage PMR better without recourse to a rheumy. At least he owes it to you to read it even if he refuses to act. Don't hide how ill you feel. Or try a different GP...

Hidden profile image
Hidden in reply to PMRpro

Hi PMRpro...regarding your info and link to the article co-authored by Dr. Kirwan. My own research led me to contact Dr. Kirwan by email in August of 2017. He responded and attached a copy of the paper you posted above and replied to me as follows: "Thank you for contacting me. I have retired now, and no longer treat patients, although I continue to follow up on some of the research projects I have been involved in.

It is not easy to distinguish between PMR and RA (and sometimes one can change to the other). My old department still uses the system I reported in the attached paper to diagnose PMR. (Prednisolone is the UK equivalent of prednisone which is used in the USA.)"

PMRpro profile image
PMRproAmbassador in reply to Hidden

The first author Dr Quick is still working and uses the system in her new post.

It is indeed a nightmare. Maybe you could print off some of the info from here and show it to your doctor. The fact that pred is giving you relief should surely mean something. If he spent a day in your shoes and knew how bad it is......... 🤬 Doctors

Just for info. PMR diagnosed September 2017. Began with pain in left buttock descending down left thigh. When I had a girdle of fire round my hips, I went to gp. Started the predictive journey. I never have had any pain in neck and shoulders.

I did develop pain in right wrist which from advice on here I learnt was a bit of a flare and advised to up the preds. Advice which I took. The long and short is, the advice on here is better than you get from most docs! I carefully managed my GP in that he now calls me every couple of months to ask me where I am on the journey, whether I am sticking/ reducing/ or have raised my dose and what prescription I would like. And it's a good feeling being in control! Good luck.

JavaJay profile image
JavaJay in reply to MamaBeagle

Ever since my sister sent me an article about PMR, and asked me if the symptoms sounded familiar, I have been reading, and reading, and then reading some more about PMR on this forum. It's only been a few months, but based on what my doctors have said to me I feel like I'm better informed than they are! I'm ever so grateful for all the posts. Without this knowledge, I would probably have excepted the Seronegative RA diagnosis without question.

Predictive journey??? Blooming predictive text! Should be pred journey....of course! Oops.

Hello, I'm from the states also. Are you in Michigan? Your rheumatologists advice sounds almost identical to what my rheumatologist says to me. I was diagnosed with PMR in February 2018. My symptoms were major upper arm, shoulder, hip pain. I couldn't even reach up to get a coffee cup from the cupboard without pain. My rheumatologist and GP suggested Methotrexate as a safety net while tapering Prednisone. Sometimes I feel if I wasn't on the Methotrexate, I would have developed GCA, which for now, I do not have. My PMR was quite severe at onset. Both of my doctors tell me that Methotrexate is far less damaging to the body than pred. However, it comes with its own side effects, i.e. nausea, fatigue, etc. Actually, I hate taking that stupid medicine once a week, but keep drudging on as I am now down to 5mg pred. And being down to 5mg also has its own symptoms. Not quite the PMR onset symptoms, but feeling wrist pain, upper arm morning pain, outer hip burn, back of thigh aches. So with all I've said. Does Methotrexate help? I don't know. I take it so hopefully I can get off the stupid prednisone, then eventually off the methotrexate. Sometimes I wonder if sugar is a trigger for PMR body pain.

JavaJay profile image
JavaJay in reply to lizg0017

Hi, I'm in Washington state. I understand the coffee cup reach. I would have to use my right arm to lift my left arm up high enough to get a cup down. My Rheumatologist wants me completely off the prednisone, and taking only methotrexate. She gave me a prescription for 30days of 10mg Pred and said "No more." I remember the untreated PMR pain all too well. I know that going from 15 to 0 in 30 days is crazy! That's why I'm on referral for a new Rheumatologist. There's always the possibility that I might need methotrexate in the future to taper off the prednisone, but for now I just want a proper diagnosis. I think sugar is an inflammatory food. I've cut carbs to try and thwart off the pred spread.

piglette profile image
piglette in reply to JavaJay

Surely your rheumatologist must know that could have serious consequences as far as your adrenal glands are concerned not even counting the PMR, I assume you have been taking pred for more than a couple of weeks. If so it is downright dangerous. At least you have a months supply. It also sounds like you are on too low a dose of pred.

So sorry about all you have been going through! I relate quite a bit. I started with PMR but it opened the door for RA. I tried with all my might not to move on to MTX along with prednisone, but I was losing the battle and couldn't take care of my kids. So I started MTX and it has been a good experience. Almost no side effects felt. It has helped me get back to 80-95%, depending on the day. I'll take it! I could not have done it as a trial however as it took about 3.5 months to feel full benefits. Im trying to stay here with slowly weaning on prednisone (on 4.5mg now!) but my Rheumy is saying I'd be completely normal if I started a biologic. I am mulling that over but think right now its a no. Oh and I've done diet and acupuncture until I drove myself mad...

So, my advice is, if you start the MTX, know you need to stay on it to see real effects. Unless you can't tolerate it, or try the injection which was better for me. Its not a quick trial.

Best of luck with a better relationship with a new Rheumy and my prayers for you to heal and get better!

JavaJay profile image
JavaJay in reply to hey_suz

Thank you for your kind words! I'm so sorry that you are having to deal with both PMR and RA. And having kids who are depending on you for their care. Bless your heart! I'll bet you enjoy those 80-95% days! I'm on my own and feel overwhelmed having only PMR to cope with.

My GP said he once told a Rheumatologist that he doesn't prescribe Methotrexate because he's intimidated by the side effects, and the Rheumatologist told him that he should be more intimidated prescribing Prednisone. So I guess there's something to be said for both of these nasty drugs.

I've decided against the MTX trial. Since it doesn't take effect for quite sometime, it really wouldn't prove anything, and I'd be opening myself up to a host of possible side effects.

Take care of you!

I got PMR right after a shot for shingles . I know my pharmacist and asked him to research that and he came back with no results.

PMRpro profile image
PMRproAmbassador in reply to Scarter770

It is a listed adverse effect for the first shingles vaccine.

healthunlocked.com/pmrgcauk...

Javajay, I appreciate your post. I realized in September that I was having a reoccurrence of PMR, after about 4 years of being symptom free. But during the summer I had a swollen and sore knee. I thought I had injured it in a Zumba class. Now I realize it must have been PMR. Most of my pain is now in my shoulder and upper arm. After seeing my rheumatologist and he recommended a flu shot, the PMR flared even more. I had planned to get the new Shingles vaccine in January, but I don't think I will! I hope you get into a new and more helpful Rheumy soon!

JavaJay profile image
JavaJay in reply to Herbgirl

I have thought my knee was an isolated incident, but I'm now beginning to rethink that. After I got the flu shot, my right arm ached at the injection site for 2 weeks. Then my left upper arm started to ache. Felt like I'd been lifting weights from hell. My shoulders started aching just days later. Followed by a very stiff neck. Lastly, my hips and thighs started seizing up, making me do a Frankenstein walk in the mornings. I've gotten a flu shot every year. I'm beginning to rethink that as well. I had a shingles shot about 3 years ago with no known problems.

Herbgirl profile image
Herbgirl in reply to JavaJay

Frankenstein walk! Such a good description, I like it. I don't much feel like laughing in the morning when it's happening, but right now, while I am feeling better, I can enjoy a chuckle. I don't have pain in my knees, but they must be swollen, because I can't bend them all the way. BTW, I had the old shingles shot a few years ago and had quite a bad flare.

Hi,my wife has RA now for over 20 yrs...getting worse as years to by..now in 70s..Tried Mtx per advice...very bad reaction!!Tried 7.5 by injection...still bad ...have up and managed on steroids now...not perfect but better than side effects of mtx!!Granted some people can take it...some can,t!

JavaJay profile image
JavaJay in reply to Stick007

I'm sorry to hear about your wife. It sounds like she's had a dreadful time of it. My Rheumatologist told me not to read the inserts about MTX that come from the pharmacy. She had a prepared handout for me. She said it's not that bad because it's given to kids. She did mention possible hair loss, for which she prescribed Folic Acid. Nausea, fatigue, and mouth sores were minor side effects according to her. Minor if your not the one taking the stuff!

piglette profile image
piglette in reply to JavaJay

Rheumatologists do talk jibberish sometimes. I thought kids were given steroids, I would not have thought that made them any less lethal, why should Methotrexate be different?

JavaJay profile image
JavaJay in reply to piglette

Agreed! The rheumatologist was so intent on getting me to take the methotrexate that I began to think that maybe there was a pharmaceutical kickback in it for her.

PMRpro profile image
PMRproAmbassador in reply to JavaJay

Someone should force feed her some! The folic acid is primarily for the mouth ulcers and if you still have them you probably need more, But I felt worse on mtx than I ever did with unmanaged PMR! The fatigue was unbelievable - and the crowning glory that made me say no way!

PMRpro profile image
PMRproAmbassador in reply to Stick007

Anybody would think that methotrexate was the only available RA drug... I came across someone still on gold therapy last year. That is positively antediluvian! There's a whole range of options these days.

I certainly would not take methotrexate as a trial. I have PMR & GCA, & due to swelling in my right foot, my Rheumotologist thought I may have the start of RA. However like you my RA factor & ANA are both negative, which I know doesn't mean one doesnt have RA. My Rheumoltologist wanted me to take methotrexate because of the possible RA, & also to get me off steroids faster. I looked up the possible side effects of methotrexate & decided they appear to be a lot worse than pred. Furthermore my brother who has Chrohns was on it, had an allergic reaction to it & ended up temporarily paralysed unable to turn over in bed to ring the emergency services. Along with my GP I decided to wait to see if any if my symptoms get worse ( & they haven't). If anything, although my foot is still swollen, it is a lot better possibly partly due to my eating lots of ginger & turmeric. If my symptoms due get worse, or it was proved I had a RA I would consider taking methotrexate.

JavaJay profile image
JavaJay in reply to Janstr

That’s very frightening what happened to your brother! Thankfully the paralysis was temporary. I read that some methotrexate side effects are not dose related, and that some may not go away after the drug is stopped, regardless of how long it was taken. That is scary! When I started on prednisone, my swollen knee improved dramatically as did the PMR symptoms. For now...that’s good enough for me. I will need a lot more proof before I believe that I have RA.

Janstr profile image
Janstr in reply to JavaJay

We think alike

Thank goodness you've ditched the doc! Best wishes.

JavaJay profile image
JavaJay in reply to Telian

Thanks!

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