what are long term effects of pmr if I do not take prednisone?

I am newly diagnosed and the standard beginning course has only taken my sed rate from 90 to 61. The doctor wants it below 30. I am really concerned with long term steroids. Are there other treatments? Is pain the only consequence of refusing long term steroids?

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  • Hi honeyadams,

    The answer to the last part of your question is - potentially, no! PMR has the ability to induce GCA which is inflammation in the arteries, particularly in the head which can effect the optic nerve and cause blindness, and also in other parts of the body, such as the heart. PMR is not a dangerous illness in itself, but if it leads to GCA then this is very dangerous

    Taking prednisolone reduces the risk of developing GCA from 70% to 30%. There is, I believe, no other drug which has this benefit. No other drug can compare to pred. when it comes to reducing inflammation.

    Try to remember that, although pred. has many potential side effects, very few folks get them all and most of the 'nasties' go away as the doses are reduced.

    If your inflammation is not reducing quickly, then you either need a higher dose of steroids or you need to stay on the dose longer - that depends on how long you have been on it.

    Some of our members do not take pred, but use special anti inflammatory diets and herbs to keep the inflammation down. For some folks this seems to work, but they all know that they are, maybe, at risk of getting GCA. Personally, I will never put my sight at risk.

    I have been on pred. for just over 2 years and feel I am getting better. My starting dose was 30mg and the pain was gone in 3 hours. I have reduced the doses very slowly, because reducing too quickly can cause the illness to flare.

    I am on a healthy diet - no added salt or sugar and no refined carbs. I also take suppliments and use lots of anti inflammatory herbs in my cooking.

    Hope this helps,

    Very best of luck, Pats.

  • Hello Pats,

    Interested in your comment about anti-inflammatory herbs - appart from ginger (& Devil's Claw) what are they?

    Regards,

    Confettibridal

  • Hi confettibridal,

    Well, I guess the list is endless - but I keep a list on my kitchen wall and use quite a lot of them. Herbs are

    basil, black pepper,cayenne pepper, chilli pepper, chives,cinnamon, curry powder, garlic, ginger, mustard, nutmeg, parsley, rosemary, thyme, turmeric plus, eating lots of the cabbage family such as broccoli. Extra virgin olive oil is good and so is very dark chocolate.

    Include as much omega 3 food as possible, both in sea food and oils. All fruits that have dark red skins are good and that includes wine made from red grapes.

    Happy cooking,

    Pats.

  • I would be very very interested in the herbs you use. I have been diagnosed with PMR for 1.5 y yrs now and have tried to get below 10 mg of pred a number of times and even now going up to 12.5 and even 15 mg for a couple days and it does not help much at all and it seems the pain and stiffness is going into my fingers and hands and into my back and spine more as well. Would be interested greatly in your diet. We do juicing of greens and carrots andapples every morning but wondering if we are doing toooo much greens.

  • Hi bluejaygirl,

    I think lots of veges are very good, but would go easy on fruits that are really sweet - your system can't deal with sugar so keep it to a minimum.

    Have put a list of some herbs above.

    Pats.

  • Thanks, My husband after doing lots of kale and swiss chard and a little apple and carrots for a few months had severe arthritis come up in his hands. When quitting so much greens for a while it went almost completely away. something was amiss in his diet. could have been other factors I suppose too.

  • Thanks so much for your reply. I am newly diagnosed and have only been on the first course of pred for 10 days. Adjusting down now to 20 mg a day to see if it further reduces sed rate. Do you know where I can verify that untreated pmr can lead to gca?

  • Hi honeyadams,

    As someone who had undiagnosed, and therefore untreated PMR, don't take the risk!

    My PMR turned into GCA, again undiagnosed, until over the period of 4, yes 4 days I lost the sight in my right eye.

    I started then on 80mg of Prednisolone April 2012, now down to 12mg. Side effects can be unpleasant, but sure better than losing sight. And if you lose sight in one eye you'll get put on larges doses anyway to preserve the other eye.

    As you can guess I'm pretty adamant that you do all you can to stop getting GCA, wish I had been so lucky! So do as the medics say! Dorset Lady.

  • I have had PMR since 07-15 and did the Pred routine for 3 mos the tapered off due to Rotator Cuff surgery. Off for 6 weeks then back on 20mg from 03-10 to 08-03-15 then wanted off Pred and told my GP get me off of this demonic/ evil drug and he tapered gradually for 3 months although he wanted a 5 month taper because he said I would have a relapse. Big Pharma does not want to cure or prevent any disease because they are in the Drug business. Of course dr's do not want to run the risk of not prescribing drugs for fear of being sued, but I can tell you, look up Prednisone and the down sides are, Cataracts, weight gain, increase in blood sugar(diabetes) an increase in Blood Pressure and bone loss. Sure, my shoulders and neck hurt as well as my right wrist, and I get fatigued quite easily but I am gutting it out with no Pred. The web says losing your eyesight is very rare and only 30% of those with PMR actually get GCA, not 7 out of 10 even if you are not taking Pred. I believe that is a scare tactic. So far I have not had any headaches, sore jaw or tender scalp. Although my eyesight is not what it used to be, no double or blurred vision, just cannot read fine print like I used to do without readers. I wish you luck and my blessing are with you and do whatever you heart tells you to do.

  • Baldbill, I agree with a lot of what you're saying. I have had what we think is PMR for four years and I have tried prednisone a couple of times but the side effects were Beyond what I can handle. I have had some temple pain, jaw pain, scrap pain and blurry vision but it comes and goes quickly and I just cannot imagine trying to go have long term on prednisone.

    So if it helps you get through PMR but gives you osteoporosis, diabetes and dozens of other long-term illnesses you've just traded one terrible thing for another or several others.

    I read the posts on here for about how many people are trying so hard to get off of prednisone and how difficult it is. When I tried it when I came off of it I went into adrenal insufficiency and Felt absolutely horrible for three weeks. I could barely get out of bed and everything was spinning around all the time. I don't think I would survive Long term prednisone.

    For her very happy for the people who can't take it and get relief. I wish I could but since I can't I just have to manage with pain medications diet and herbal supplements but I'm in a lot of pain all the time.

  • Hi honeyadams,

    Yes, the answer lies on this site. I believe we have members who have had experience of this happening. Their PMR has gone on without being treated, not diagnosed, they have then got GCA and then they have been diagnosed with PMR later.

    Even treated PMR can lead to GCA.

    Ask the question directly to the site and I'm sure you will get more info.

    Pats.

  • Hello honeyadams

    Pats has highlighted the very real and dangerous risk of as you say "refusing long term steroids" if you have been diagnosed with PMR.

    A rheumatologist was unable to diagnose my symptoms during a year of horrendous pain which left me bedbound for several months and travelling to hospital appointments by ambulance and wheelchair. I experienced a spontaneous recovery towards the end of the year but my joy was short-lived when I suddenly developed different and debilitating symptoms. Giant Cell Arteritis was eventually diagnosed together with Polymyalgia.

    It is highly likely that I succumbed to GCA because the linked condition Polymyalgia had remained undiagnosed and therefore untreated, allowing the uncontrolled inflammation to spread from my muscles to my arteries. If GCA is not diagnosed and treated as a medical emergency, then our eyesight is at risk. There are also other very serious situations that can arise from untreated inflammation in our bodies.

    Don't worry that your sed rate has fallen by a relatively small amount - that will gradually decrease further and eventually to normal as you continue to reduce the dose, but to reduce too quickly can lead to a flare, so slowly slowly is key, preferably having repeated blood tests prior to each reduction.

    I do hope you will soon feel much better.

  • When initially diagnosed with PMR, an illness I had never heard of, I was worried by the lengthy list of side effects from the Pred. Both my CRP level and plasma viscosity were very high. (Some labs test Sed rate instead of plasma viscosity.)

    I discussed my concerns with my GP who was horrified that I might refuse to take Pred and went on at length about the risk of damaging my sight if I developed GCA. She said that once sight is lost it cannot be restored. Having seen my Mum's elderly friend struggle with sight loss(not GCA) I realised how devastating this would be to me and made the decision to take Pred to protect my sight.

    It took 2 months of 15mg Pred daily before my blood tests returned to normal. 20 months later the last blood test was normal and I am managing on 1.25mg Pred and can do more and feel better although still not right.

    I hope that you feel better soon.

    Pat M

  • I was one of those diagnosed with GCA some 4/5 years after the initial PMR diagnosis. I probably had it initially but the 20mg Prednisolone I was started on was sufficient to keep it at bay and it wasn't until the dose reduced to 5mg that the GCA symptoms became apparent. It took me that long to reduce the Pred as I had other problems requiring steroid treatment in between the two diagnoses and had had to increase the dose several times.

    However, I am an atypical GCA patient as my temporal arteries are not affected, but the medium arteries are and if the inflammation was not controlled it could have led to some real nasties - I was glad I already had the knowledge required to understand that I really needed the steroids if I wanted to live anything like a 'normal' life with the prospect of remission at the end. There was always the possibility that the temporal arteries would become inflamed and I wasn't going to take any chances with my sight.

    Although I am now 11 years plus along the journey, I am doing really well and down to my maintenance dose of 5mg. In spite of a few domestic stresses this year - not to mention the awful weather - I feel this could be a good year for me.

    Catie

  • Hi all. You are right about the link between PMR and GCA (of course). However, current figures are that one in ten cases of PMR also develops GCA, after treatment. We estimate that one in five PMR cases may present with GCA symptoms before treatment. It's not a question of the PMR causing the GCA, but that in this 'variant' of GCA, the walls of the arteries become involved. Steroid treatment for PMR, though at a lower dose than the starting GCA dose, will protect you from this getting out of control in the temporal artery that feeds blood to the brain. The UK Department of Health accept that 1000 people a year are losing sight in both eyes from undiagnosed GCA. But PMR patients should be always vigilant. If you haven't already, please email info@pmrgcauk.com with your address for an info pack. PMRGCAuk website also has a lot of resources to download. Please don't forget the work of the charity and help us in our mission to raise awareness!

  • Thanks for the info. I am in the states and have not found much info here. My internist thinks cga is very rare. Maybe you see more of it due to the possible Northern European background link.

  • Hi Honeyadams, I am posting from NYC, U.S. I had the same problem. It took me four months to have a biopsy done, with a high c reactive protein reading. They said I was "too young at 59 " and that I did not have all the "markers", my sed rate was normal. They wanted to retest my sed rate - I said, "what about the c reactive protein" well medicaid didn't cover another C reative protein test. Having done medical billing, I asked, if the doctor said, there was "a medical necessity, it would cover it ?"

    "yes" they said. The head neurologist refused to send a letter requesting the biopsy, because it was an "operation" and I didn't need it. "Do you want your head cut open?" he asked. ? ?

    Four months later, my neuro surgeon for another condition, asked if he could do a biopsy, for GCA, because from my records, it seemed I might have GCA? I said "yes" and one was immediately scheduled. and yes I had it. They started w/ 100 mgs of prednisone per day, had to change to methylprednisolone, and nexium -- could not tolerate high dosages of the prednisone. went to 80 medrol then slowly down to 5 mgs of medrol per day w/20 mgs of methetextrate a week.

    Would continue to insist. For some reason in the U.S. they don't consider GCA. My mother at 70, in 2001 had the same problem and she had it. When my biopsy was positive, I was asked if I had northern European ancestry, I said, "yes, my father is northern Italian, my mother English and Jewish heritage." They seemed to think there was some significance. I was just glad to have the diagnosis. I had been really sick, the way I remember my mother being, with this. It is a very serious disease. Would recommend Weill Cornell, if you are in the city. They do seem to have some specialists in GCA and will test for it, I understand.

    It seems that the English doctors may have a better method of tapering with medrol or prednisone. It sounds good. I have not heard of this in the U.S. They seem to go down a certain down a certain amount -- ask if you are ok, then go lower. The English taper of the prednisone sounds a better way. I suffered with Cushingoid syndrome from the high dosages from flares and I still suffer with it, not so badly though. Use herbs and the anti inflammatory died. good luck and would recommend, suggest to keep asking. all my best, and good health,

    Whittlesey, NYC. U.S.

  • Hi Kate,

    I am interested in your comment "Steroid treatment for PMR, though at a lower dose than the starting GCA dose, will protect you from this getting out of control in the temporal artery that feeds blood to the brain". As you may remember I have signs of possible GCA but rheumy says it is impossible at 47 and has instructed me to reduce from 30mgs to 15mgs over 3 weeks. If I'm reading your comment correctly, does that mean I am still protected at 15mg even if the symptoms seem to worsen on reducing dose? My rheumy seems to be of the opinion, if GCA were to occur it would have occurred at the time the PMR started over 18 month ago.

    One confused Runrig :-?

  • Which herbs are used I have about 10 different herbs in my garden it would no problem growing some more

    Regards

    Dottom

  • Hi honeyadams

    I have been treating PMR with diet, supplements and herbs, but I've done this in the knowledge that the risk of GCA is very real. I see a herbalist every month. She takes note of absolutely everything I say and makes up a mixture accordingly. Herbs are powerful things and I wouldn't dream of concocting my own mixture. My GP has been supportive of this, with the caveat that I have monthly blood tests and phone the surgery immediately or go to A&E if any symptoms of GCA appear. Things are steadily improving, and at least I know any symptoms I have are down to PMR and not steroid side effects.

  • Agree, MoiraCT. Am still taking 5mgs, because I have GCA and have been diagnosed w/ three arteries "dissecting". apparently the only treatment for this, which is very serious is prednisone and aspirin at this time. I am to go to the ER immediately upon pain in any of these arteries, one of which is the cartoid. Can you post to me the name of your herbalist ? Have seen two in the U.S. very good. Would like to speak to her or him about your combinations of herbs without medrol. Have had Cushingoid's diagnosed, not good. fatigue extreme debilitating. don't want any more "conditions". If you can, can you send the name of your herbalist ? Thank you. Very good NYC neurologist, recommends the anti inflammatory diet, which helps. Thank you, very much. all my best, Whittlesey, U.S. NYC my email is lynnandmarie@live.com (Marie is my middlename) if you would rather post to my email. thank you.

  • Hi Honeyadams,

    I resisted steroids for 2 1/2 months, I too was not found of steroids, I tried the "natural way", however the pain won out and I started on steroids. What a difference, I have been on them for 16 months, I too am in the states, and did not find much info...but I also did not want to lose my eye sight. I am down to 3.5 mg, my doctor put me on Methylpred (Medrol). My doctor tells me this steroids has fewer side effects.

  • Hi Lawrie, I too, am in the states, NYC. and it does seem a problem getting diagnosed here, for GCA. I like the herbs and diet also. but due to the GCA I am taking the 5mgs of medrol. If they tell me to go higher I do. I have a cartoid dissection, which can be very dangerous. found some very good doctors. When they tell me to go to 20mgs, I do. This English way, discussed on this blog, of reducing seems better than in the U.S. Once you take the high dosage and the crisis is over, they don't tell you about this slow reduction. There is a formula they follow, I am not exactly sure what it is, but it sounds good and I think it is better. Here, once your c reactive is lower, they say "ok now go down to 5mg, but they give you no formula or sense of the best way to do it." I've been reading, here, and I think it's a better way. am still working towards herbs, very little medrol anti inflammatory diet, and a decent life. good posting with you. good health all my best, Whittlesey NYC U.S.

  • Thanks for your answer. Where in the states are you? I am in Sacramento.

  • is it true that Diretics and Steroids should not be taken,I also have COPD and using Puffers for his, I also understand that Puffers for COPD do not intefer with the taking of Preds. for PMR,

  • Jolaine, I take diuretics and have inhalers (for asthma) alongside Pred and have never heard of the possibility that they might not like each other. The steroid inhalers do add a little to the steroid load but I have never found it a problem. I also have a steroid nasal spray. It must be 10 or more years that I have been living with all three, although I don't use the nasal spray all year round.

  • Well for me I tried everything, changed my diet, tried natural anti inflammatory products instead of steroids, but when I couldn't walk anymore and in so much pain I couldn't sleep, I gave into taking steroids and immediately the pain was gone. I have noticed that my skin is thinner and I end up with little bruises that just appear out of know where. My sed rate was 96 to start with almost 4 years ago. I am so much better now!

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