I had my first appointment with the Rheumatologist yesterday and she said that part of my story does not line up with PMR. I think she is wrong based on my research and what I have read here. Here are the things she said don’t line up:
1. When I do too much activity (i.e. overdo it) I get pain in my shoulders after. Sometimes it lasts for a few days after. She said that usually people with PMR experience pain after a period of time of inactivity. I explained that at first, before I was on prednisone, indeed my pain was worst first thing in the morning and after a period of inactivity. But now that I’m on prednisone, my pain is not as bad in the morning. However, if I try to do too much, I will get pain and shakiness after - either later the same day or the next day.
2. When I do activity not related to my shoulders at all, I will get pain in my shoulders. For example, if I try to do some leg exercises, or walk a little too far, my shoulders will ache after. She thought that was “very strange”.
3. The amount of prednisone I am on is high for PMR. After doing the crazy fast tapering and starting over, I have been on 20mg of prednisone for 15 weeks. I still felt terrible, so I increased to 22.5 mg for the past 3 weeks.
She wants to rule out vasculitis, so she is sending me for a CT scan. After she gets the results of the scan (provided it is not vasculitis I guess) she wants to add on methotrexate.
In the meantime I got some of my blood test results back. Before I started prednisone in January my CRP was 29 (it says normal is less than 4.8). In May it had come down to 12.7. Now, after an additional 15 weeks on 20-22.5 mg of prednisone, it has only come down to 11.5.
One thing I don’t understand is whether methotrexate reduces CRP. I thought it was a steroid sparer to allow me to reduce prednisone. But why would I want to reduce prednisone if my CRP is still so high?
I would really appreciate your thoughts on this since there is a lot more knowledge and experience here than I believe the doctors have.
Thank you
Anne.
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I recognise paragraph 1 in my own symptom picture. I am pain free sitting still with my feet up. Exerting myself too much causes pain the next day. I think we can be fairly individual in our experience of PMR pain ( morning was not my worst time except when untreated.) I think we are also individual in our absorption of Prednisalone. Unlucky people like you need more than average, maybe.
I was offered Methotrexate, which I declined because I dreaded another layer of side effects. Mrs Nails wrote a post about its benefits though - do a search. If you have forms of arthritis going on as well, I believe it is of proven benefit for that. Less so for PMR. As for the CRP levels, I don’t feel qualified to comment. Somebody else will though.
I am all for additional tests, like the CT Scan for Vasculitis. Symptoms in Autoimmune diseases can be so similar and you definitely have something persistent going on. Let us know what happens. I know you just want answers!
Thanks for your reply. My impression from being on this forum is that people experience pain the next day, or a flare, from overdoing it, so I don't understand why the dr said that didn't fit with PMR. I'm sure we are all different, but it doesn't seem to be uncommon to experience pain after doing too much.
She would almost certainly claim she's had many - but whether that is the truth or whether she ever listens to them is another matter!!!!
Hi Anne
What did the Rheumatologist say about the length of time you’ve been on 20mg & then increased to 22.5mg that’s a hefty dose for PMR so l think the Rheumatologist is right to be suspicious.
Methotrexate will help reduce your CPR by increasing the effect of the Pred as a Steroid Sparer but it does sound as if there’s more going on......
Has she asked you to reduce you Pred at all? If it’s PMR you really should have felt the improvement pretty quickly, a lot improve at 15mg & it’s only fairly recently they’ve considered 20mg as a starting point for some people but not for 15weeks.
I have not read your past history but l will look at it now. I’ve copied PMRpro in so she’ll pick it up later.
If you’re interested in My Experience of Methotrexate l can send you the links or you can find them on my Profile.
I’m hoping by this time next week l will be going back on Methotrexate!
Hi Mrs Nails! The dr thought that I had been on quite a high dose for PMR and given that I still have symptoms she said it isn't a perfect picture of PMR. I did experience a great improvement in symptoms within a couple of days of starting prednisone. It was like a miracle. But as I reduced, the symptoms started coming back. On my second round (after the first round of ridiculous tapering schedule) I was okay until I got to 17.5 and then the exhaustion kept me from reducing further. I ended up increasing because I felt like I had a flu. The pain wasn't worse, but the exhaustion was worse.
Could you please send the link to your post about your experience with methotrexate? I couldn't see it on your profile. Thanks!
I'd been on Prednisolone for a couple of years but could never get below 11mgs while I was working, so l decided to retire early to see if I could get the dose lower.
Following my Retirement I had two separate big flares & my Consultant at the time put me on 30mgx1week; 20mgx1week; 15mgx1week; he did this twice within a couple of months. It was from then on that things got out of hand & I had to keep going back to 20mg as 15mg was no longer holding the PMR at bay, it must have been about for around 10months, to be fair my GP was beside himself with worry, he eventually got me a referral to a new Consultant who started me on the Methotrexate. I really was not overly keen on this but by now I'd packed on 3stone, could barely walk without getting out of breath & my BP was through the roof, my resting pulse rate was 100+ so there was no choice but to try it!
I had the bloods & X-rays done then started on 10mg Methotrexate once a week for 2weeks plus Folic Acid 5mg on the other six days, then increasing the MXT to 20mg once per week.
At first it was unremarkable but after about four weeks I suddenly started to find the smell of cooking made me nauseous (on MXT day) l tried changing it to take at night but still the nausea persisted if l smelt food cooking, l was offered injections but declined; so l changed my MXT day, took a simple antiemetic, kept my food simple & within a week or so the nausea passed.
I came down 1mg Pred per month & happily got to 7mg when unfortunately l was diagnosed with Breast Cancer, so the Methotrexate had to be stopped for Surgery & then Chemo.
For about six months post Chemo the PMR held at 5mg but then as it started to raise its head again, l went back to 7.5mg & asked for a re referral to the Rheumatologist, she started me back on the Methotrexate at the end of October 2016 I'm now at 7mg; l have been down to 5mg but have varied between 5mg -> 7.5mg
Methotrexate is not an easy drug but then Prednisolone is a double edged sword, at first it did me good but then it started to cause me other issues. There are several people on this forum who've had bad experiences with MTX but I can only tell you my story & for me it did what the Doctors wanted.
That's why when the PMR started flaring again, l was happy to increase to 7.5mg but I chose to ask to add in the Methotrexate again, this time with no issues whatsoever.
It's very much a personal decision but for me it worked, I've experienced Chemotherapy since so Methotrexate for me second time around was an easy choice.
If you do start it I hope you do well & if it doesn't suit you it can simply be stopped, there’s no need to wean off it.
Don't forget to the take your Folic Acid as prescribed, my Consultant recommend's the other six days at 5mg but other Doctors have differing protocols.
If you have any specific questions please ask on the forum or direct message me using the two speech bubbles at the bottom the page.
Best Wishes & Good Luck 🍀
Mrs N
UPDATE
August 2018
Things have now changed for me regarding Methotrexate as I had high ALT Levels the MXT was stopped; l had a Liver Scan which shows l have a fatty liver so at this time l cannot take Methotrexate.
January 2019
Following my Fibroscan there has not been any other damage to my Liver, all my specific liver blood tests are normal, Cholesterol Level Normal & No signs of diabetes.
Comment
I can honestly say I’m missing the impact Methotrexate had as my PMR is flaring at the moment & in the past l’ve been steady on 5mg Pred & Methotrexate 20mg
If you have a specific questions I’ll be happy to answer if l can.
My Liver issues were picked up quickly before had any symptoms that’s why they do the monthly blood test.
July 2019
Well l am back on 12.5mg Prednisolone & waiting to see a Rheumatologist on the NHS next month with a view to recommence Methotrexate...........
They are overlapping symptoms but feel different pains for me, but flare fatigue is just as bad. Hard to describe but the main difference is that my pain meds for fibro did not help PMR at all. I couldn't understand how I could take strong pain meds and still have so much pain. When I got pred my pain dropped back to usual fibro pain . If rheumatologist can't help the referral to pain clinic may be in order.
I'm wandering if I have pm,my pains been constant in my neck,shoulders and hips especially at night I can't sleep due to the severity of pain and restless legs are really twitchy when I rest it gets worse!!!!!!!
PMR isn't really the disease - it is the name given to a set of symptoms which can be due to a range of underlying conditions. In the case of the PMR we discuss here it is an autoimmune vasculitis and it is closely related to Giant Cell Arteritis. One of the things that should happen before settling on a diagnosis of "simple" PMR is that the other options have been ruled out.
And while the effects may be similar, the underlying mechanisms are very different. Everyone I know who has the misfortune to have both say they feel different. Fatigue is a common factor in almost all autoimmune disease - but it can manifest in different ways even within that disorder.
One main difference is that fibromyalgia is not an inflammatory condition. So if your blood work is showing inflammation, then you have something else going on (perhaps in addition to fibromyalgia).
I agree that you can't have too many tests as you need to discount as many conditions as possible. I can see myself in 1 and 2. You don't just walk with your legs it engages everything. My shoulders often hurt even after chopping veg at first. I have only been as high as 15mg so can't comment on the higher doses.
The way I understand dmards/steroid sparers is that they allow your body to squeeze every bit of help the steroid can give. If you are on 10mg but your body doesn't absorb it effectively then it's like you are on a lower dose so dmard is supposed to help you get as much pred as possible out of your dose. I don't think there's an exact mathematical relation as everyone absorbs steroids and other drugs differently. It means you can go down to a lower dose of pred but keep the benefit of a higher dose. Obviously dmards suppress the immune system so you have to consider everything to decide your treatment protocol. Of course this is my understanding so hope I am not giving you duff info. I have been on a dmard for 2yrs and got from 15mg to 6mg without flaring but I have tapered very slowly and may have got there in 2 years anyway. All you can do is gather info and make your own mind up. No one can force feed you a medication. If you are stuck in 20s for a long while I can see the point of dmard and your rheumy's questioning pmr.🌻
Hi Hidden so when you went on Methotrexate, how long before you started tapering your Pred. I move up to 15 mg next week after having been on an introductory dose of 10 mg. My GP says I should wait until I am on 15 mg for about 6 weeks before starting to taper.
I am on mycophenolate, but essentially it's the same thing-an immune suppressant (difference in side effects). It was a good month or two as it took 8 weeks to get to the full strength dose. But basically until my symptoms diminished and my CRP stopped rising and started to drop and settle at around 10. Then I only dropped 1mg or 0.5mg every 4 to 6 weeks if I was symptom free (same as initial 15mg doses). It took over a year to taper to 6mg last September and i have stayed there as symptoms started everytime I tried to drop. So over12mths to drop 8mg of pred. Maths never my strong point!
Ziggy, l was on 18mg of Pred when l started the Methotrexate & it takes about 3months to be fully active (the same in reverse if you stop MXT) but l started reducing my Pred after a month, as it was imperative l reduced because of side effects of the Pred & reduced consistently until l reached 7.5mg (changed to 0.5mg reductions from 9mg)
Unfortunately for me, l had to stop MXT for Surgery & Chemo but 14months later l went back on MXT as the PMR was making itself known again, the Chemo had given it a good hit on the head for a while but it wasn’t for giving up!
I'd been on Prednisolone for a couple of years but could never get below 11mgs while I was working, so l decided to retire early to see if I could get the dose lower.
Following my Retirement I had two separate big flares & my Consultant at the time put me on 30mgx1week; 20mgx1week; 15mgx1week; he did this twice within a couple of months. It was from then on that things got out of hand & I had to keep going back to 20mg as 15mg was no longer holding the PMR at bay, it must have been about for around 10months, to be fair my GP was beside himself with worry, he eventually got me a referral to a new Consultant who started me on the Methotrexate. I really was not overly keen on this but by now I'd packed on 3stone, could barely walk without getting out of breath & my BP was through the roof, my resting pulse rate was 100+ so there was no choice but to try it!
I had the bloods & X-rays done then started on 10mg Methotrexate once a week for 2weeks plus Folic Acid 5mg on the other six days, then increasing the MXT to 20mg once per week.
At first it was unremarkable but after about four weeks I suddenly started to find the smell of cooking made me nauseous (on MXT day) l tried changing it to take at night but still the nausea persisted if l smelt food cooking, l was offered injections but declined; so l changed my MXT day, took a simple antiemetic, kept my food simple & within a week or so the nausea passed.
I came down 1mg Pred per month & happily got to 7mg when unfortunately l was diagnosed with Breast Cancer, so the Methotrexate had to be stopped for Surgery & then Chemo.
For about six months post Chemo the PMR held at 5mg but then as it started to raise its head again, l went back to 7.5mg & asked for a re referral to the Rheumatologist, she started me back on the Methotrexate at the end of October 2016 I'm now at 7mg; l have been down to 5mg but have varied between 5mg -> 7.5mg
Methotrexate is not an easy drug but then Prednisolone is a double edged sword, at first it did me good but then it started to cause me other issues. There are several people on this forum who've had bad experiences with MTX but I can only tell you my story & for me it did what the Doctors wanted.
That's why when the PMR started flaring again, l was happy to increase to 7.5mg but I chose to ask to add in the Methotrexate again, this time with no issues whatsoever.
It's very much a personal decision but for me it worked, I've experienced Chemotherapy since so Methotrexate for me second time around was an easy choice.
If you do start it I hope you do well & if it doesn't suit you it can simply be stopped, there’s no need to wean off it.
Don't forget to the take your Folic Acid as prescribed, my Consultant recommend's the other six days at 5mg but other Doctors have differing protocols.
If you have any specific questions please ask on the forum or direct message me using the two speech bubbles at the bottom the page.
Best Wishes & Good Luck 🍀
Mrs N
UPDATE
August 2018
Things have now changed for me regarding Methotrexate as I had high ALT Levels the MXT was stopped; l had a Liver Scan which shows l have a fatty liver so at this time l cannot take Methotrexate.
January 2019
Following my Fibroscan there has not been any other damage to my Liver, all my specific liver blood tests are normal, Cholesterol Level Normal & No signs of diabetes.
Comment
I can honestly say I’m missing the impact Methotrexate had as my PMR is flaring at the moment & in the past l’ve been steady on 5mg Pred & Methotrexate 20mg
If you have a specific questions I’ll be happy to answer if l can.
My Liver issues were picked up quickly before had any symptoms that’s why they do the monthly blood test.
July 2019
Well l am back on 12.5mg Prednisolone & waiting to see a Rheumatologist on the NHS next month with a view to recommence Methotrexate...........
I'd been on Prednisolone for a couple of years but could never get below 11mgs while I was working, so l decided to retire early to see if I could get the dose lower.
Following my Retirement I had two separate big flares & my Consultant at the time put me on 30mgx1week; 20mgx1week; 15mgx1week; he did this twice within a couple of months. It was from then on that things got out of hand & I had to keep going back to 20mg as 15mg was no longer holding the PMR at bay, it must have been about for around 10months, to be fair my GP was beside himself with worry, he eventually got me a referral to a new Consultant who started me on the Methotrexate. I really was not overly keen on this but by now I'd packed on 3stone, could barely walk without getting out of breath & my BP was through the roof, my resting pulse rate was 100+ so there was no choice but to try it!
I had the bloods & X-rays done then started on 10mg Methotrexate once a week for 2weeks plus Folic Acid 5mg on the other six days, then increasing the MXT to 20mg once per week.
At first it was unremarkable but after about four weeks I suddenly started to find the smell of cooking made me nauseous (on MXT day) l tried changing it to take at night but still the nausea persisted if l smelt food cooking, l was offered injections but declined; so l changed my MXT day, took a simple antiemetic, kept my food simple & within a week or so the nausea passed.
I came down 1mg Pred per month & happily got to 7mg when unfortunately l was diagnosed with Breast Cancer, so the Methotrexate had to be stopped for Surgery & then Chemo.
For about six months post Chemo the PMR held at 5mg but then as it started to raise its head again, l went back to 7.5mg & asked for a re referral to the Rheumatologist, she started me back on the Methotrexate at the end of October 2016 I'm now at 7mg; l have been down to 5mg but have varied between 5mg -> 7.5mg
Methotrexate is not an easy drug but then Prednisolone is a double edged sword, at first it did me good but then it started to cause me other issues. There are several people on this forum who've had bad experiences with MTX but I can only tell you my story & for me it did what the Doctors wanted.
That's why when the PMR started flaring again, l was happy to increase to 7.5mg but I chose to ask to add in the Methotrexate again, this time with no issues whatsoever.
It's very much a personal decision but for me it worked, I've experienced Chemotherapy since so Methotrexate for me second time around was an easy choice.
If you do start it I hope you do well & if it doesn't suit you it can simply be stopped, there’s no need to wean off it.
Don't forget to the take your Folic Acid as prescribed, my Consultant recommend's the other six days at 5mg but other Doctors have differing protocols.
If you have any specific questions please ask on the forum or direct message me using the two speech bubbles at the bottom the page.
Best Wishes & Good Luck 🍀
Mrs N
UPDATE
August 2018
Things have now changed for me regarding Methotrexate as I had high ALT Levels the MXT was stopped; l had a Liver Scan which shows l have a fatty liver so at this time l cannot take Methotrexate.
January 2019
Following my Fibroscan there has not been any other damage to my Liver, all my specific liver blood tests are normal, Cholesterol Level Normal & No signs of diabetes.
Comment
I can honestly say I’m missing the impact Methotrexate had as my PMR is flaring at the moment & in the past l’ve been steady on 5mg Pred & Methotrexate 20mg
If you have a specific questions I’ll be happy to answer if l can.
My Liver issues were picked up quickly before had any symptoms that’s why they do the monthly blood test.
July 2019
Well l am back on 12.5mg Prednisolone & waiting to see a Rheumatologist on the NHS next month with a view to recommence Methotrexate...........
Thank you Hidden for your very comprehensive reply. I hope you can get back on the Methotrexate as it certainly seems to have helped you. Re. folic acid I have been prescribed one 5mg tablet 48 hours after the methotextate.
Oh, I see, it helps you get the most out of the prednisone. Okay, that sounds like it would be a good plan given that the prednisone is not quite getting my CRP level down to normal. Thank you for the information!
My experience is similar. My pain is very well controlled on 20mg compared to my initial symptoms (can’t get in/out of bed, cand raise my arms, pain improves while standing and worse after resting). But since prednisone I have had 1-2 days of much milder pain either in legs or shoulders, primarily the day after being too active. I think it is my body saying remember you need to slow down. Prednisone may make you feel better but you still have an auto immune disease.
My dr. won’t dx me with pmr. wants to say it is RA and put me on methotrexate and take me off prednisone too. I have a follow up today. I disagree with her and I am not willing to try methotrexate so I am not sure what my options will be. I hope to know more today.
At you are getting checked for vasculitis so hopefully you can rule that in or out and get some answers!
Thanks for your reply. I am glad to know that others have the same experience because it seems like I am pretty much a classic case of PMR, yet the dr said I don't fit the picture.
Er - PMR IS a vasculitis!!!!! There are experts who think that PMR, GCA and large vessel vascilitis are all the same disorder manifesting in slightly different ways. I don't think there is much evidence that mtx helps though. If it doesn't make you ill it may be worth trying - but there are no guarantees.
It sounds to me as if she has a rather limited experience of PMR ...
Hmm... right ... now I'm not sure exactly what the CT scan is supposed to accomplish. They are doing a CT scan with contrast and I got the impression it would be in my neck area. Gee, I wish I had a recording of my appointment, everything is hard to remember!!
Sounds like your first visit was a bit overwhelming. Unless this rheumy has experienced PMR herself, she can't tell you what she's been telling you. But you are on high doses of steroids for PMR., and with high blood markers. She is right in testing for vasculitis. If you test positive, then the question becomes what size vessels are involved before your diagnosis gets a name.
Methotrexate is a touchy subject with me and some others. Methotrexate in large doses is used to treat cancer. In small doses, it is used to spare the patient of high steroid doses to make tapering more tolerable I guess , but Methotrexate is a cytotoxin meaning it can cause cancer, not likely in small doses, but possible. I was on it briefly until 2 doctors, unrelated to each other, one a 2nd rheumy and one a hematologist, thought it inappropriate. So I stopped it. I didn't feel different without it; since I have a family history of various cancers, I will not take it. I have been on 8 mg of methylprednisolone, and Thursday, I gave my GP, Dr. Gasgupta's article on why IM injections of Depot methylprednisolone seems to have much less side effects than oral Prednisone.
So he obliged me, calculated an IM dose and gave the injection. In 3 weeks, I will get another. I am happy not to worry about dosing up and down myself and if Dr.Gasgupta 's study is right, then it might be possible to achieve remission more quickly. Will see what happens. So far, I feel well.(and maybe not gain anymore weight). The article was published in the British Journal of Rheumatology in 1998. Depending on the outcome, I may have wished I knew about this 3 years ago.
Thanks for all the info and for telling me about methotrexate being a cytotoxin. I looked that up and learned more information about it. I have now decided to at least try CBD oil first, especially since my rheumy hasn't actually prescribed the methotrexate yet. I will try CBD for awhile, get my blood tested, and see if anything has improved.
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