I HAVE PROBLEMS WITH PAIN IN BOTH HANDS EARLY MORNINGS ON STEROIDS FOR PMR. APPOINTMENT IN 6 WEEKS WITH BATH RHEUMATIC HOSP. HAVE TO DECIDE WETHER TO START ON METHOTREXATE TABS. ANY ADVISE WOULD BE WELCOME AS I CANNOT MAKE UP MY MIND CONCERNED ABOUT THEM AFTER READING ABOUT POSSIBLE SIDE EFFECTS.
REGARDS
I am sorry to hear about your hands. No experience there but will tell you about Methotrexate..
I wasn't sure at first that is why I took it for so long. I would get really sick feeling and feel hypoglycemic with a HUGE NEED to eat. I felt weird and poisoned and would eat and eat me eat. I gained 40 bs because I could not stand feeling so sick. I literally gave my son all of my credit info and passwords etc because I sincerely thought I was dying.
6 months on those pills and I finally figured it had to be that. It was like I was a different person everyone noticed and then I knew I would never take those again.
Nothing I read about it said they did any good with PMR.
Now remember we are all different and this is what happened to me so if you take them you will know about this particular side effects I got.
I have been on Methotrexate for about 18 months for GCA.. I hesitated to start for fear of side-effects but I was assured by two rheumatologists that at a 15mg a week dose I should not suffer those and it would help with reducing the steroids from which I have had bad side-effects. Apart from a change in the texture of my hair and nails, I don't think Methotrexate has caused me any problems; but I do wonder if it has helped in any way. There is no real way of judging that.
Incidentally, drinking of alcohol and sitting in the sun are both strongly advised against while on Methotrexate.
Steroids certainly caused a huge increase in appetite and therefore in weight which, although decreased, continues to some extent although I am now on a low dose, 5mg, a day.
I hope this might reassure you to some extent . Good luck.
Hi
I tried out .Methotrexate and took it for 3 weeks. Once a week 3 tablets and the next day 1 tablet of Folic Acid. I felt very sick and after i had to vormit and my blood pressure went down to 39/92 I stop. I also had my lips and mouth full of
Blisters.
My Rheumy wanted me to try out Arava, I decided to try out the Bristol tapering.
Ond low dosage 6 old dosage .one day new dosage 5 days old dosage. One day new dosage. 4 days old dosage one day ew doage 3 days old etc.
I am currently again on 7 mg trying to lower to 6 mg.
I have PMR for 2 years and GCA since June 2015 when I was put on 60 mg Pred
I have had 4 flare ups in the past but hope within a year to be able to get off Pred. which caused me high pressure in my eyes too.
Can I just say - that isn't the Bristol taper, that is the "Dead slow and nearly stop" approach - much slower than the Bristol paper suggests.
You are right it was invented by a Swedish gentleman who couldn t lower his Pred below 3mg.
Actrema - Actemra Genentech see Medpagetoday.com/rheum...
Could hep as the active stuff of tocilizumab blocks a protein called IL-6.
Excessive production of i terleukin IL-6 auses imflammation i the body like PMR.
Unfortunatelyit comes o ly in infusion, that not only the med. Is very expensive you also have to pay for the clinic and the doctor.
The original was Ragnar the Swede's version, The "Dead Slow" approach is different and it was extended and developed from Ragnar's version over a period of a couple of years. By me.
Your last comment won't apply in the UK - the healthcare system is totally different.
It does sound as if your doctor thinks you may also have an inflammatory arthritis and mtx is the first line approach for that. However, PMR does sometimes cause hand symptoms although many rheumatologists are unaware of that. The Leeds group has done a study which shows that hands and feet are very often involved in PMR.
Have you tried taking your pred as early as possible in the morning - then the hand symptoms may improve on the current dose of pred. You don't say what dose or how long you have been on pred - and that also has a bearing.
Remember you will really only hear the downsides of mtx - there are many patients who take it happily and find no problems, it is usually the ones who have problems who you hear from. I have a friend with PMR who is sure the mtx helps her manage with a lower dose of pred and who has no problems at all, she is even allowed to drink alcohol by her doctor. That is a very variable point of view.
You can always try and stop if it makes you ill or causes other problems. It is important to take enough folate on the days you DON'T take the mtx to avoid some of the potential side effects but that doesn't stop all the side effects.
Remember, the data sheet lists ALL the potential side effects that have been seen during use - as with pred, no-one gets them all and some get none.
thanks for your replies, to pmrpro i have had Pmr. for 3 years reduced down to 5mgs when hand inflamation started went up to 6mgs not as bad. But if i want to get any lower with the Pred. i have to decide to go along with the MTX.
regards
Um - no, you can't assume that taking mtx will DEFINITELY get you to a lower dose. It MIGHT - but it may not. The only way you can find out is to try - but you must remember it is not a guaranteed way of reducing your pred dose. It works for some people, it doesn't for others. If it had been shown to do it reliably it would be given to us all - it isn't and they don't claim that in the guidelines.
Many people have been told they should take mtx but instead tried a very slow reduction - and were successful with that alone. The anecdotal evidence seems to be that if you go slowly enough, most people can reduce a long way.
That isn't to say you shouldn't try it though.
Hi
I was having difficulty reducing my steroids because the PMR symptoms would always reappeared & l could never get below 11mg.
I'd also had a couple of major flares & had my Prednisolone increased to 30/20/15mg x 1 week at each dose & then start reducing by 1mg.
However, I'd put on 3stone in weight, developed high blood pressure & shortness of breath when I walked, so my GP sent me for an urgent second opinion to a different Rheumatologist.
The new Consultant decided Methotrexate was the way forward as a steroid sparer.
Like you l was very concerned about the side effects but by this point I knew something had to be done.
I reluctantly started the Methotrexate once a week with Folic Acid on the other six days. It was pretty unremarkable really (as far as I can remember) until I developed the nausea associated with MXT, I tried having it at night & then had an antiemetic along side it & after a couple of months it passed.
I was able to reduce from 18mg past the troublesome 11mg & down to 7mg before I ran into another health issue & the MXT had to be stopped for surgery.
I did eventually get to 5mg (while on Chemotherapy) but the old PMR started to show itself again about three months ago, so I went back to 7mg & it settled so l am trying to reduce again.
I am currently waiting for a referral back to my Consultant as I'd like to get back down to 5mg or less so am willing to try the MXT again but that's a very personal decision.
I wish you luck with your decision & hope you start to feel better soon with or without MXT
Best Wishes 🍀
Mrs Nails 💅🏼
Hi Kenny boy.
I have decided to start MXT as I have not been able to go below 13 mg Pred since December 2015.
It's a mater of having to as I have been diagnosed with Cataracts, Ocular Hypertension and Osteopenia; all due to the Pred. My belive is that there are fewer side effects with MXT, although not.totally convinced, considering the requirement for blood tests for Hep A and B prior to treatment and monthly liver function tests.
Good Luck with your decision. It has to be yours and an informed one
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