Newbie struggling with decreasing Prednisone!

Bones, joints and muscles
1

I am a 72 year old female diagnosed with Polymyalgia  Rheumatica on November 24, 2014. I am a retired school teacher, and I have been very active all my life.  I love traveling in our RV and camping in state and national parks with my husband, hiking, walking our Basset Hound, do needle work, attend a water aerobics class, read a lot, etc.  

My first symptoms developed in September with stiffness and pains in legs, thighs and lower back.  Internist thought it might be the Simvastatin and Zetia for lowing cholesterol that I was on, and took me off those,  did multiple blood tests which only showed high muscle enzymes, and put me on heavy dose of Naproxen. The follow up blood test showed the muscle enzymes had dropped.

Then I had an HD flu shot on September 27th, and things got so much worse to the point I could barely walk; terrible pain in my arms and shoulders to the point I could not raise my arms up over my head and barely hold a cup of tea; terrible pain in the backs of my thighs to the point I could not sit down for any length of time and ate meals standing up; severe fatigue; no stamina, etc.   My internist tried Tramadol, Gabapentin, and Lyrica which did nothing, and then put me on prednisone which was a miracle, and I could function and was pain free. He had also tested me for Lymes' Disease, Fibromyalgia, Rheumatoid Arthritis, Lupus, West Nile, etc. etc. During this time I was also sent to a neurologist who did an Electromyography (EMG) & Nerve Conduction study (NCS) which showed no problems, and also had a CT scan of the spine which showed very mild arthritis.

So now off to a rheumatologist.  After her round of blood work and x-rays on my back and shoulders, she diagnosed me with Polymyalgia Rheumatica, with the flu shot possibly being the “trigger” that sent me into full blown Polymyalgia Rheumatica.  She had me do four prednisone infusions (250 mg. each) in two weeks; put me on 15mg of oral prednisone; methotrextate 2.5 mg three tablets together once a week; Actonel 150 mg. - once a month; and folic acid - 1 mg. daily.

After my second visit in early January she increased the methotrextate to six tablets together once a week; and stepped me down to 10 mg. of prednisone daily, and is still stepping me  down with the hope to have me on 5 mg. of prednisone every other day by my next visit on March 4th.  I'm presently (Jan.26, 2015) at 7 & 1/2 mg. of prednisone daily and struggling with additional stiffness of thighs and shoulders, and no stamina again. I've been on this the past four days and every days more symptoms coming back.  So last night I took the full 5 mgs instead of 1/2 of a tablet, making it back to 10 mg. for the day.  This morning was so much better!!! Not sure I'll make it to her hope of 5 mg. of prednisone every other day by March 4th.

Finding this site and forum has been awesome.  I've barely scratched the surface reading the posts, but have already learned so much the past two days of reading.  I know this is long, and promise shorter posts in the future.

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Hi Connie, I am so sorry that you have PMR and like you I am a newbie and was diagnosed 12th November.  You are more than welcome on this site, you will find people with lots of experience and a few with medical backgrounds.  Also there will be lots of support and advice.  Hang on in there and I am sure there will be someone along soon to answer your questions or allay any fears you may have.  Good luck on your journey.     Pat

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Dear Newbie.  I know everyone's PMR is different but think you reduction was to fast. I started at 15 and went down to 10 slowly getting there only after a year then kept reducing about a quarter of dose at a time after 5 I started to cut the pills in half now am down to 3.  I have had the disease for 4 years now.  I am 66 and have always been very active, but have slowed down quite a bit.  You might ask about the amount of the reduction with your physician.

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I am also new to this site, have pmr since last March but not diagnosed till last June. Your story sounds just like mine. Have never had such pain and unable to get out of a chair, stand up, take care of myself. This is a tough disease. The fatigue is awful and after reading some posts in here I now know it is normal to be tired all the time. My rhuemy has as of today knocked me to 4 mg prednisone and up my dose of methotrexate to 5 pills once a week. I also have severe osteoporosis so am now on fosamax. I turned 70 last March and all this just hit me hard. Now trying to lose the weight I put on. Dr. said go to low carbs but do not know if I can lose as long as I am on prednisone. Any answers out there would be great.

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Hi Connie, so sorry you have PMR. I have had it since September, untreated until 17th December because of  underactive thyroid which required treatment first. So glad to start on 15mgmof prednisilone daily for four weeks in Dec. It did the trick, I am much better now, on 12.5 for 2 weeks an then 10 for 4 weeks. I am not quite so good just now but will phone GP if the drop to 10 makes me worse. Hope you are well at the moment.  

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Hello Connie. Sorry you have had to join our little club but you will indeed get lots of support.  Your rheumy seems to be following an unusual path.  As others have said, 15mg pred as a starting point often provides immediate relief and the reduction from that point is no more than 2.5mg in two stages though may be even smaller stages down to 10mg.  Many will remain at 10mg for months before being able to start reducing again.   You will come across lots of information on this site and you will get a lot more guidance from others but from what I have gathered Pred is the only effective treatment for PMR and your body will tell you at what speed you can reduce the medication.

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Awful....I feel for you.  I know the pain .....the aching shoulders and aching back.  No stamina.  I was diagnosed with PMR 5 months ago, and had to endure flares because I tried to reduce too fast.  I started with 20 mg, and my rheumy wanted me to reduce by 5 mg weekly.......WELL, THIS DID NOT WORK.  My GP was more knowledgeable about PMR and does not insist on fast reduction.

I am on 15 mg for a while, and then will reduce by 1 mg for several weeks.  Fast reductions do not work and the flareups are tough to take.  My Rheumy suggested MTX also, and I refused and I refused to take it.  I hear that it does not work well with PMR.  Good luck on this painful journey.  PMR is a true challenge as it is life limiting, and it is difficult to get used to this disease as we all were so active.

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Thanks for all the "Welcome's and replies!"  After reading many of the posts on reduction of prednisone, I, too, wondered if the rheumatologist was reducing mine to fast.  My question is are any of you on methotrexate, as well?  I  started at three 2.5 mg tablets of mexotrexate one day a week taken together in the evening and now take six 2.5 mg tablets together once a week.  She said she hoped to get me off the prednisone and just on methotrexate over time.  So at the present time I'm on 7 & 1/2 mg of prednisone daily and 15 mg. of mexotrexate once a week.  I know it takes awhile for your body to adjust, so I'll try to stick it out for the rest of the week, before calling her.  

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Eileen will inform you about methotrexate.  She is very knowledgeable and gives us wise guidance.

Does Methotrexate actually agrees with you?

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Connie

i am also new to forum.    However, I was diagnosed with PMR in August 2013.   There are many great discussions in this forum that will help you.   Try to read as many as you can.

The most consistent advice that I can share is that Predisone really helps with the pain.   I was on methotrexate for a short time but had severe reaction to it.   But, that was just me,   All good rheumys want to help us reduce the amount of Predisone, mine included.    But, this is done over a very long time.   For many, this is years.  Please, try to consider this a longer term treatment.   Most of us are doing great on a regular dose of Predisone (versus the pain of PMR).

My PMR treatment started with 20 mg of predinsone, which is quite common.     It took many months of moderate reduction (which meant no pain) to get down to 10 mg.    Some have told me on this forum that was very fast.    The point is that the initial strong dose for a period of maybe weeks, or less, is important.   

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Hi connie, I'm sorry to hear that you're now a member of this PMR/GCA gang and that you're having a bit of a bad time of it at the moment.

did your rheumatologist give an explanation as to why she is treating you with a mixture of prednisone and mtx. As you probably know PMR is an auto immune disorder whereby the immune system attacks itself because it thinks there's something wrong. This results in inflamation of the joints and large muscles and it's that inflamation that causes the pain. Prednisone is the only medication that is an effective anti inflammatory, therefore when you take the prednisone, it controls the inflamation and the pain reduces considerably. The usual treatment regime is 15 mgs for 6 weeks, then 12.5 mgs for 6 weeks followed by 10 mgs for anything up to 1 year, and then that's followed by the very, very slow tapering method that's advocated on this forum. 

If your rheumatologist stuck to this regime there is no need to give you mtx as well. Mtx is a steriod sparent and rheumatologists give it to their patients mostly because they're afraid of the side effects of prednisone forgetting the very bad toxic side effects of mtx. Also, if I understand correctly, present research indicates that mtx does not aid the PMR into quicker remission. The PMR will burn out as and when it's ready and not before.

as you said yourself you took 10 mgs and today you feel so much better, well that doesn't surprise me. This is a very difficult situation because your rheumatologist clearly thinks that they are giving you the best treatment, but it's my opinion they are misguided. You are not seeing them until March, I would be tempted to follow, what we call the PMR Bristol plan, the reduction regime I described above - you can google that - and simply tell them that you'd prefer to reduce your intake of drugs and stick to the essentials which is prednisone. I am sure you would feel fine sticking with the Bristol plan of reduction. You cannot force PMR as I said it will burn out as and when it's ready, so therefore what is important is that at every step of the condition you take enough prednisone to control the level of inflamation and not attempt to force your inflamation to fit the level of anti inflammatory. Good luck connie, christina 

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Hi Marilyn, yes weight gain is tough, but you can lose weight but it's hard work simply because you do have to change your eating habits. I'm presently on a low carb diet so I'm afraid you have to cut back on bread, pasta, rice and all those lovely cakes. But I've managed to lose 7 lbs, so I'm very happy and I'll keep going. Christina

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You still need highpred you have pmr take high levels for a lot longer

all the best

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hi, connie, like you I am new to PMR, in fact I am still waiting for GP to start Pred, but am looking forward to being painfree. I work on a respiratory ward here in the UK, and I have seen some terrible results of methotrexate use, it really affects your body's ability to fight lung infections...if you can live without it, dont take it!!

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Over the last two and a half years I have lost 37lbs in weight whilst still on pred, the weight started to go at a dose of 15mg and I am now down to 4mg. I have used a strict low carb diet - my useable carb per day is generally under 50mg. 

A couple of other ladies in the UK lost weight using Weight Watchers - but they too stuck strictly to their guidelines for diet. It can be done but you have to do your part - it won't be easy-peasy weight loss.

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Connie, I can't think why you were started on MTX at the same time as the steroids, apart from your doctor mistakenly believing that a lower starting dose of steroids plus MTX was the way to go!.  It isn't, as unfortunately you have already discovered

The only treatment that has so far been proven to work to reduce the inflammation of PMR is Prednisolone, and generally at a starting dose of 15mg.  MTX is sometimes added in as a steroid-sparing agent ONLY when a patient is having difficulty in reducing the steroid dose.

It sounds as though you were having an initial good response to just 10mg of steroids BUT that lower dose wasn't enough to get complete control of the inflammation over the very short period that you were on it.  Perhaps 6 weeks or so at the 10mg steroid dose would have been quite successful on its own without ever adding in MTX, as proven by your sudden improvement back at 10mg.

What to do now?  Either return to your doctor with a copy of the BSR Guidelines for managing PMR, or find another doctor who is more clued up, suggesting that you remain on 10mg and see how you progress, or ditch the MTX and increase your steroid dose to 15mg for a few weeks.

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I'll answer here - because the first thing I have to say is, I don't think your rheumy knows a lot about PMR. The most recent guidelines state that methotrexate (MTX) has no real place in PMR. The idea of the MTX was to act as a "steroid sparer" allowing the same effect to be obtained from a lower dose of pred beccause the MTX is thought to change the way the body processes the pred. Three studies have been done in the past: one said it helped, one said it didn't, one didn't know. General experience is now showing - no it doesn't. I know 2 ladies very well who initially were able to reduce their dose further than before but then had major flares, one developing GCA, and had to return to very high doses again. 

Some of us think that the patients for whom MTX works may well not have just PMR but have been mis-diagnosed with late-onset RA (LORA) which isn't uncommon. It is absolutely certain that if what you have is PMR, then MTX on its own will NOT be a successful approach to pain relief. If it were - it would be used instead of pred much more often. It isn't. 

https://patient.info/forums/discuss/pmr-gca-and-other-website-addresses-35316

If you follow this link you will come to a post on this site which has several further links. One is to a paper by one of the top PMR groups in the UK with their approach to managing PMR and GCA. They describe their reduciton plan - it does not include any use of MTX but is a fairly slow reduction. They keep patients at 15mg for 6 weeks and 12.5mg for a further 6 weeks before leaving the patient at 10mg for a year. It results in a flare rate of 1 in 5 rather than the more common 3 in 5. The vast majority of flares are due to reducing the pred dose too fast and too far. On their approach you would currently be on 10mg and that does appear to be right for you at present. The inflammation must be eradicated and then prevented from returning by an adequate dose of pred. PMR is the name given to the symptoms of an underlying autoimmune disorder - and until that burns out you will need some pred. The reduction is to find the lowest dose that will manage the symptoms. This UK group have obviously found they get fewer flares by sticking at 10mg for a long time - but many patients do manage to reduce further sooner providing the reduction steps are much smoother and spread out.

Below 10mg reductions must be in far smaller steps - the basic rule should be not more than 10% of the current dose, so 1mg, reducing to 1/2mg steps as time goes on. Several of us have developed slow reductions, spread over a few weeks, using 1mg drops to save cutting tablets. These seem to allow a lower dose to be achieved sooner than 15 months after the start as the paper I mentioned proposes. It becomes a question of trial - if it works, fine, if it doesn't you return to the dose that did work. There is a detailed description further on in the link I gave you, posts 4 and 5 I think.

The use of alternate day doses as your rheumy is suggesting is not recommended in PMR - it rarely works. I used it for a while but at a much higher level and was never able to reduce below 18mg/2 days. It depends on you being one of the people for whom the anti-inflammatory effect of pred lasts the maximum amount of time. The effect lasts for between 12 and 36 hours or so - if your window is under 24 hours, then taking the dose every second day allows the inflammation to resurge every other day and probably requiring more pred to get it under control again.

The first link in the link I gave is to a support site from a group in the NE of England where you will find the British Society of Rheumatologists guidelines, they are not so different from the US guidelines. There a link to this paper I have discussed and to another review paper on management of PMR. None use MTX as a first line approach and most of them won't include it any longer as a second line approach. If your rheumy is not prepared to discuss adopting what is considered best practice for management of PMR, then I would suggest you seek one who is. Pred remains the gold standard therapy for PMR - whether doctors like it or not. It works well and used properly allows a good quality of life. But it depends on you being on an adequate dose - if the dose is too low you might as well not take any at all.

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Hi dragon, sorry to hear you've been diagnosed with PMR, but what's your gps reason for not having started you on prednisone. They should have no excuse. Once diagnosis is made it's a matter of getting your patients on the medication Asap, as you say you can't wait to be pain free and just imagine his much better you'd feel! Get back to them and request treament begins Asap. Good luck, christina 

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thanks christina, booked in on thursday, will post here afterwards. you are all brilliant, and its such a relief to find you!!

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Good, dragon you're a nurse working on a very important ward, we can't afford to have you off sick too long! Also, you've spent your whole working life looking after others, when you need care it should be there. Good luck for about 4-6 hours after your first dose and then the subsequent days after, believe me you'll feel like a new woman. Before my diagnosis I cried and cried because I was in so much pain, then about 5 hours after my very first dose I cried and cried because I was so happy that I was no longer in so much pain. Do keep us posted. Regards, christina