Polymyalgia Rheumatica :: Coming Off Prednisone And Starting Methotrexate Or Azathioprine
Jan 12, 2016
I almost feel a fraud here as the docs say I don't have PMR.
On the recommendation of this group I requested a 2nd opinion. I asked to be referred to see Professor Bowman at The QE Birmingham.
Today was my big day. Well the Prof was lovely. He listened really well, gave me a good examination and is following up with loads more blood tests.
I was also treated to xrays on my chest, hands & feet.
Now the downside (again) he went over all my blood results from the last 9 months and said that every result pointed to PMR. But bigggg BUT,
he doesn't feel he can say it is as I am too young! (44) I certainly don't feel to young when I am trying to get out of bed and get moving in a morning.
I have been on pred for few months now after begging my GP. Then refusing to leave the surgery until they listened. My GP agreed to a trial. Base line bloods for ESR & CRP 6 weeks on pred at 15 and then more bloods. Results were amazing and my bloods came back almost within the normal range. Good news my GP has since said I do need steroids.
I am now at 10mg a day but I feel it could do with being higher. Today Professor Bowman said he is really worried about me taking steroids. He agreed I needed them but is concerned about long term use and my age. I got moon face very quickly on pred and Prof commented that he could see pred was already making changes to me that he didn't like.
He wants me to come off pred using the dead slow method and wants me to start another drug.... Either Methotrexate or Azathioprine. I get tp choose.
So my lovely people have you had any experience of these drugs?
Which one would you choose?
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It's now two years since first diagnosed with Polymyalgia Rheumatica and the first Prednisolone which was like a miracle and I guess still would be if I 'overdosed'. Currently well stuck at 10 mg there seems no way forward. I've tried the slow taper but the first day I drop there is a reaction so I had decided to just take a quiet view and stick at 10mg until the new year and then try the slow taper again.
I'm not uncomfortable at this level and it does not worry me to stay at this level.
But, the Hospital called today as there was a cancelation and I was overdue to see the Consultant. Chatted over my position and he expressed concern that I had become steroid dependant, something that can happen after two years. Whilst the dependency was not something that concerned him in itself it did however at the 10 mg level. Get to 5mg 'ish and that would be more acceptable.
So he wants me to go on Methotrexate, starting with a three month course running alongside the 10 mg of Prednisolone. This is to be closely monitored by a 'specialist' under one if the consultants (can't remember for what) and will mean blood test one or twice a week. Then after another Rheumy appointment in three months a decision will be made to start lowering the Prednisolone.
The whole thing seems horrific, especially as I have just noticed in an article on this site the following 'There is little evidence for the efficacy of steroid-sparing agents - eg, methotrexate or anti-tumour necrosis factor agents. Methotrexate is the most commonly used corticosteroid sparing agent.'
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I saw my rheumatologist today and after being on Prednisone for 22 months and only getting it down to 9mg, which has happened several times, she continues to STRONGLY insist I start Methotrexate to help reduce my Prednisone dosage! She says I should at least give it a try even at the lowest dose for 3 months to see if it helps. She simply wants me to do whatever we can to reduce my Prednisone because of her real grave health concerns about my being on it long term. She says that if I don't start it at our next visit in 3 months she'll have to send me back to my doctor because she'll no longer be able to help me........and can bring in a new patient whom SHE CAN!! I don't want to risk the side effects of Methotrexate so I'm in a real quandry here. May I ask what experiences any of you have had with Methotrexate?
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Although my symptoms began a year ago I was not diagnosed with PMR until the end of July when the RA Doctor put me on a 15 mg daily dose of Prednisone. Within a week I felt like a totally different person. I thought I had my life back. In Sept my blood work showed my inflammatory markers had dropped to normal range. In three months the Dr wanted me to reduce to a 12.5 daily dose which I did. It only took about 4 days and all my symptoms were back full blown. She told me to go back to the 15 for a month and then try again. Again the same results and I went back to 15 for another month then dropped again. Same results. Only this time the RA Dr doesn't want me to increase the Prednisone but take pain meds to help me adjust to the lower dose. I ask if I can at least try lowering the dose slower she agrees so I go to 14 mg for two weeks then to 13 two weeks then 12.5 then 11 then 10. I want off the Prednisone as well having had many of the lovely side affects that come with taking it so even though my pain is growing I try to stick with it. I see my primary Dr for pain management. My blood work is showing elevated C reactive protein but my RA Dr seems to think it's an acceptable level. I start PT, and do a pain education class. Slowly the flu symptoms come back as well many nights sometimes all day. I break down many a morning trying to get up to start the day and often cry myself to sleep at night. I go back to my Primary Dr to see how to handle all the pain. She had put me on Cymbalta in January and I thought it helped some so she increased that. I don't like taking so much pain meds but I have to now to get through the days and nights. She does blood work again and my C Reactive Protein has doubled. I get a call the next day that she has talked with my RA Dr and I should go back up to 15mg a day till my apptmt with the RA Dr which was today. The thing is the 15mg is not subduing all the pain like it did before so here I am 7 months later back to where I started only I now have pain in more places than before. Today the RA Dr says she still wonders if I could actually have RA even though I am not manifesting the swelling in the joints that accompanies that. She suggests adding Methotrexate but I dont like adding yet another drug with its own set of side affects to the steroids until I research it. I have to increase the steroids now greater than the 15mg a day so I can have a life! I would like to hear any input/experience on the Methotrexate and just on the steroid use for PMR in general. I sometimes wonder if I was reduced too quickly !!
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After 7weeks of methotrexate and one dose increase it is starting to work.My shoulders are starting to improve and my thighs are a bit better.Only problem is my knees;despite losing nearly a stone of prednisolone weight gain (still quite a bit to go)they are suddenly a nightmare when trying to stand up as the pain is excruciating even with analgesics.Good news ESR is down to 30 and CRP 6.Will mention my knees to rheumatology nurse.
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Is it ok to have an occasional glass of wine while taking this stuff? I had one the other night and got a terrible headache. I am on a couple other meds too.
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I'm so worried about my stomach and muscle wasting with the Prednisone for my PMR.
I've only seen one author write about it, but that was in 1994. I don't see any more recent studies.
Seems a lot of benefits from it from what she said, but...I was was excited to read about Betaine for stomach healing, but it says corticosteroid users are at high risk, do NOT use.
I refuse to take PPI's for I hear they make one worse when the acid rebounds.
I'm so sad the Pred has messed up my stomach. My diet is restricted enough as is. I'm down to 6 mg, but still in pain, but refuse to go up. I'm not sure doctor's care if this messes up my stomach, I wonder if it will heal when all this is done!!!!! Or do they care? I have some relief by drinking aloe Vera juice before I eat and lieing on my stomach, but do not know if that is ok to do.
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I've had PMR symptoms since Dec, which was finally diagnosed in April. I've been on 20mg of pred since the beginning of April and mostly feel great. I'm running, biking, and actually took my kayak out to see if it would bother my shoulders, and it didn't. I'm a 68 year old male, who has always been active and in good shape.
When I read all these chats about people who are tired all the time I wonder if I am normal or if I can expect things to get worse. Is it the pred or the PMR that cause the tiredness?. My energy level seems good. I feel a little more tired during the day, but it passes. Sometimes I do take a nap when I do feel really tired. Functioning pretty normally with some awareness of mild muscle issues.
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i have started having heartburn I would swear was heart attack, if I hadn't recently had a heart cath, even though stress test was good, etc. Cardio wanted to be sure. I have been on mission to rule out GCA, due to headache and blurry vision. Biopsy came back normal. I have been taking acetaminophen for headache, which receives for about 5 hrs. I am on 10 mg Pred, down from beginning dose in May of 20. Any suggestions? Had drastic change in eyes since July, optometrist has been waiting for biopsy results, so I see him Wednesday, and Rheumy on 23rd, on and on it goes!
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how does the pred come in doses, at the moment my doctor has given me 5mg and 2.5 mg is there a lower dose so i can tell her monday.
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I am now into my 7th week on pred just reduced by 2.5 mg and have noticed that my muscles in my hands are starting to lock, it does not last long but are becoming more frequent and painful.
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My symptoms started in mid-December. I went on 15 mg prednisone on Dec 31 but had only very slight improvement, then to 20 mg on Jan 5 (a week ago). After great improvement for 4 or 5 days (nearly pain free), the sharp pain came back in the arms yesterday (worse today) and hips are starting to hurt again. Alas! Any comment?
Also, when the pain is localized (like 2 x 3 inch area of arm), do muscle rubs or icing help reduce the inflammation?
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i have had PMR for 2 years and am now in a taper from 7.5m prednisone down to 7m. I have suddenly developed a sore spot on my throat. Also, I experienced acid reflux for the first time this past week, on one occasion. Is the throat soreness related to the prednisone? An infection? Thank you for any comments.
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i have had a mild sore throat on one side for almost a month and they have ruled out any infection.
i read just recently that this could be a possible side effect of the prednisone. Has anyone ever experienced this and if so was there a remedy?
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I diagnosed my PMR after many flares. My GP did not know how to treat me when my Sed rate came back at 58. CRP in normal range. Called prescription of Prednisone: 60 mg one week, 40 next week, 20 following week. I knew that was not the way to treat it. 60 did not relieve symptoms , so I increased to 80. I know that was not the way to go but felt my GP didn't have a clue.
I have now been to a rheumatologist who changed my prescription to Methylprednisolone 16 mg tablets. I was instructed to take 48 mg. daily. I had reduced my 80 mg to 75mg before seeing him. I felt that was too fast. I started at 54 mg. daily. Was down to 40 but went back 48 mg.
My question: what is the difference in regular Prednisone and Methylprednisolone? Has anybody taken both and noticed any difference except Methylprednisolone is very much more expensive?
By the way my "rheumy" thinks PMR last for 2 years only and since I have had this since sometime 2014. I should be phasing out of this. What say you all? From what I read I don't think he's got a clue either. I feel sometime I'm surrounded be idiots. Might be time to find a new rheumatologist.
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Has anyone ever had problems with kidney stones while on prednisone?
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Have any of you had more problems with your teeth, pain, cavities etc since taking pred? Also why wouldn't my dentist like to open out a tooth to crown it while I'm taking 15mg of pred?
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Lots of discussion about whether to take ibuprofen or naproxen for periodic pain. Some comment that one should never take these two pain killers because 1) they don't help or 2) they don't interact well. Read earlier today that if either of these drugs (also referred to as NSAIDs) work for you, you don't have PMR. So when some of you "flare" there is a tendency to increase the amount of prednisone as the antidote.
I am interested in your experience here. I have found that both ibuprofen and naproxen help a lot with the pain from periodic flares, and particularly at night. I have not had any adverse reactions in any form. I have resisted increasing the prednisone because I don't want to start tapering all over again.
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The thing I don't get yet is how come people still get pain and fatigue etc if you are taking pred? If you are taking the appropriate dose then why are you still suffering? I thought the whole idea was that you take the minimum dose to control the symptoms. I understand that you might/will get flare ups but surely it's just a case of increasing the dose and not just putting up with it?
I am still adjusting my dose and had a flare up last week because I dropped it too quickly, but I get that. What I don't get is why people are suffering when it seems a simple fix to up the dose when you get a flare up.
Or have I just missed the point?
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I wonder if anyone knows if I can have an extraction while taking pred. My dentist won't do it and I've been waiting for a clinic appointment for four months.i found out yesterday they'd didn't get the referral and I've got to wait again. The waiting list is 16 weeks.
my tooth is broken in two and I've had three abscesses under it the latter I'm now taking antibiotics for which make me ill.
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Does the Pred effect anyone's hair as it seems my hair has gone very dry it's a mess. Also my skin has got really dry.
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