Polymyalgia Rheumatica And GCA :: Methotrexate Finally Working
Oct 6, 2015
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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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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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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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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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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i was diagnosed 2 years ago and since then i have been on methotrexate but since that hasn't worked i have recently been put on sulfasalazine which i take four a day and am still on 6 methotrexate a week. i am hoping this is going to work but since i have been on this i have been having bad side effects such as really bad head aches, dizziness and feeling sick all the time and lack of appetite so hopefully that will die down over the next few months. the only thing that i have found when feeling sick is by having zantac as it helps settle the stomach.
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I love fruit and eat plenty,also i have Manuka honey, my question is as we have to be aware of diabetes should we be aware how much we eat, does our body process natural sugar in a different way to processed sugars.Just a thought, been awake and up since 5.30( and was hungry so thought have some fruit before breakfast then thought am i having too much)
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I've been experiencing some aches and pains over the past few days, it started off with aching in my wrists up to my elbows, now my joints in my legs and ankles are aching, also a bit of a stiff/ sore neck and top of spine is sore. In general my whole body is aching, feels sore to touch, throbbing and from time to time can get sharp pains. I don't have any rash as yet.
I have been in contact with chickenpox lately so didn't know if Id caught anything from that at.
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I was thinking about PMR and although I am very nearly stable on 10 mg Prednisolone it is a knife edge dose. I still have many side effects from 4 years use of the steroid. In some kind of order they are:-
Muscle wastage, fatigue, lassitude, thinning of skin, easy bruising, cuts which take an unusually long time to heal, glaucoma, dry eye, exacerbated and premature cataracts which necessitated operations on both eyes to replace the lenses, virtual permanent stiffness and loss of motion in neck, constant shoulder and back pain, balance problems and now a recent discovery which I believe to be bronchiectasis. The last manifested itself with a slight productive cough I have had for about a year, with a shortness of breath which is steadily getting worse. Initial exam by GP showed no ‘crackle’, X-ray was ‘normal’ blood ‘normal’, whatever that is. Have seen this GP who gave me a course of amoxicillin (5 days) which did nothing. Then just left me to get on with things, no follow up, nothing. Not sure what to do next. I can see any one of the other doctors at this particular practice and am thinking to see one of them soon; well at least I can try for an appointment, currently 2 weeks!
Now the latest manifestation…..Shingles. Or to give it its proper title
Herpes Varicella-Zoster. A particularly painful affliction caused by the chicken pox I must have had as a child. It has affected the left side of my scalp, my left forehead, eye and face; I am not a pretty sight! By the time I knew what it was it was too late for any anti viral medication so will just have to let it take its course. Existing on Paracetamol, Codeine, Neurontin and the occasional Tramadol. All of these analgesics are for a short time only, don’t want to get hooked. Managed to see a doctor reasonably quickly about my eye who sent me to the eye unit at my local hospital, ophthalmologist examined the eye and gave me the all clear, phew!
On top of all this I have the daddy of all flares I put the cause of this down to the trauma of my new affliction. My immune system is compromised due to the daily use of 10mg. Prednisolone which I have increased to 15 mg. for a short time. It appears that any kind of trauma either emotional or physical will set off a flare.
I wondered what causes a flare in other sufferers from PMR/GCA and do they do as I do and increase the dosage of steroid and try to rest? Or is there a magical cure I should know about?
Long ramble I know but strangely feel better for writing it, apologies if you think I’m wasting your time, or a hypochondriac. (I’m not).
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To my knowledge I have never had chicken pox. I have been taking Pred for three years and am now down to 3mgs from 15. My granddaughter is with me with chickenpox. Should I be worried please?
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I was told years ago i haf fibromyalgia but now my blood work shows a high sed rate
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Background: I am 66 years old and have suffered first attack in mid November 2015... I have been fairly active person and have done some triathlon in the past, so not being able to get out of the bed on my own was pretty shocking to me... It took about one month to diagnose PMR and I started medication (prednisone) at 15 mg/day mid December.
If there is an interest, I would like to post about the progress in recovery, with special attention to exercise. I am seeing specialist every 2 weeks and complete blood work is done to monitor inflammation caused by PMR.
I would like to post what I have done thus far and future progress in (hopefully) successful recovery.
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Has anyone tried Q10 supplements, and are they alright to take with pred.
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I have recently had blood tests again and have a low esr. I have symptoms of pmr and discussed these with my gp. I begged her for prednisolone and she reluctantly agreed but only one week. I felt great! I was walking normally, getting out of bed for the whole day where I was bed bound a lot before, just felt so wonderful having so little pain in my hips and shoulders. My blood tests came back normal and she said she cant give me any more and is referring me to rheumatology again. The pain has come back, my hips are crippling me my shoulders are so so painful again and nothing else has worked, just the prednisolone. My orthopaedic specialist may give me one more injection in ten days, vpbut that will be the third and he said 3 is the max so I should have relief for 3 weeks, if previous injections are to go by but after that.
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For the last week or so, I have been getting short of breath, and very dizzy, feel like I am losing my balance, and my heart is racing. I have never had panic attacks, and this seem to start strangely enough when I have been reading....and then the weird feeling lasts the rest of the day.
Is it possible it`s the 11 mg pred I`m on? (have been for 4 years) Just can`t pin down what`s causing it! My blood pressure is ok....not diabetic...
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I am wondering if gum inflammation is related at all to the PMR, GCA. I will see the dentist in a couple of days. Thanks.
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Does anyone know whether cannabinoids have been clinically studied for PMR? There has certainly been a study that shows they may be effective against the inflammation in other diseases. Google: cannabinoids and inflammation.
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Just wondered if anyone on here has trouble with their Achilles Tendon? First thing after resting a while and if I've walked far too much they get very very stiff and painful! There doesn't seem much flexibility in either ankles. I didn't have problems with them when I was first diagnosed with PMR, only now 10 months into the condition and in 7 mg of pred!
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I have been a regular migraine sufferer for 34 years, averaging about one per week. I've been on prednisolone 15mg for a few weeks now for PMR, and not the slightest hint of a migraine. Could it be down to the steroids? I'm not happy about taking them, but maybe every cloud does have a silver lining!
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I have severe bruising on my arm. Whole right arm. Super ugly. I've been diagnosed with pmr for three years. Could be down to 5 mg. However, had major insect sting and hives and reaction. So, went back up to 40/20/10 mg prednisone for 12 days per Doctor. . Doctor gave me steroid shot, too. Please tell me that this new super dose of prednisone may have caused all this major bruising? If so, maybe can tolerate for a month or more?
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I have had PMR since March. Today I feel like I have a fever and "hot flashes". Could this be a PMR "flare"...or just a coincidental illness.
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