Newly diagnosed with polymyalgia

Posted , 11 users are following.

Hi All, I am on 50 (which I hear is young) and have been sufferening since May 2016 and only diagnosed in November. Was put on 25ml pred which almost cleared all pain and increased to 40mil to see if it would get rid of it completly. There was no real difference so went back down to 25ml. I have been really lucky as I am having no side effects yet. Trying to reduce but going down to 20 but the pain in my back and shoulders are slowly coming back. I feel that as long as it does not come back into my hips and knees I can cope with the pain. Is this the right way to think. I do want to get off pred but if I reduce more will the pain start to spread again? How bad is pred for you? 

So many questions...Glad to have found this group. 

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  • Posted

    Elizabeth,  sorry to hear you have recently been diagnosed with PMR, but, unless there was any suspicion of GCA, then there was no reason to increase your steroid dose up as high as 40mg.  You say that your starting dose of 25mg "almost cleared all pain", and that is more than many of us achieve on our starting dose.  We can usually expect to see around a 70% reduction in our pain levels within a short time of starting treatment which is then more or less taken as confirmation of the diagnosis.  Very few of us seem to become completely pain-free either at the start of treatment or as we reduce down the doses, so you have been very lucky.  The important thing once relief is achieved is to remain on the starting dose for a good 4-6 weeks and then finding the lowest dose that still maintains the same pain relief.  But key to this is reducing down through the doses very very slowly (ie in very small decrements) so that you don't miss the point at which the inflammation can sneak in and take hold again.  The steroids are not curing anything, they are just damping down the inflammmation whilst PMR takes its course and that can take anything from 2 years upwards.  At the same time, you will need to do your part and not over-exercise but give yourself plenty of TLC to allow the steroids to do their job.  Hope that helps, but ask away as there is always someone around to try and answer your questions from their own experience along the PMR road.  

    • Posted

      Thanks for getting back to me. I do feel lucky that the steriods are doing their job as I had not really appreciated how much pain I was in until they made me feel better. I am just scared about what I read about the other side effects of steriods. I am currently waiting for a bone density scan which will tell me how my bones are doing. When you say reducing the doses very slowly do you mean 5ml at a time or less? I have only been given 5ml tablets at the moment. I am very frustrated that I have to be careful with exercise as up unitl May I was at the gym 3 times a week and very fit. I hate that what I used to enjoy could make me worse. I have been told that I can't actually make myself worse with exersice but what you say seems to make sense. I will try to take it easy and look after mysefl for a change. 

    • Posted

      Elizabeth

      ?

      "I have been told that I can't actually make myself worse with exersice" ?  

      ?Whoever told you that hasn't walked in our shoes.  Of course it's essential to keep mobile but, in these very early days following diagnosis, frequent daily short walks will suffice rather than heavy workouts at the gym.  The less you exert yourself at this stage, the sooner you will be able to get on the right path towards reducing the doses and disease remission, whereas without learning how to pace yourself will surely lead to flaring inflammation and higher dose steroids overall.   Yes, 5mg reductions are too ambitious - the general rule is no more than 10% reduction at any one time, so you will need some 1mg pills in order to achieve this.

      ?It's understable to feel "scared" when you read all the possible steroid side effects from Pred, but do be careful about reading too much into it.  You may be one of the lucky ones and not experience any side effects at all.  I was on steroids for 5-6 years, starting at the high 40mg dose due to having both PMR and GCA.  My bones remained intact apart from slight osteopenia (now completely back to normal post-steroids) and my only exercise was walking in the early days plus Tai Chi and Nordic walking once my pain allowed.  Yes I gained a little weight but only about 5lbs as I was very diet-aware, avoiding too many carbs, sticking to as many known anti-inflammatory foods as I could find and avoiding those known to be pro-inflammatory.    Good luck with your DEXA scan.

    • Posted

      Elizabeth, before I was diagnosed I thought I had ordinary osteoarthritis.  i kept thinking that the more I did, the more flexible I'd become and the less pain I'd experience.  Even tried to follow a program designed specifically to deal with people who suffered stiffness.  The morning after I tried exercises for my neck and shoulders I awoke in excruciating pain, the worst I'd ever been.  On pred, I'm able to at least do all my long standing physio, walk a lot, do tai chi and Nordic walking, etc, and there are some who were used to other kinds of exercise who are able to pick up and do at least some level of same after they've been treated.  But pred can cause muscle wasting and it is only now that I'm at a very low dose that I feel some strength returning to my muscles, this despite having been very meticulous about exercising to my comfort limit every single day both before and after diagnosis.  I could never get better or stronger!

      I was freaked out by the prospect of osteoporosis.  In fact I was told after scan that I had low bone mass, aka osteopenia, and recommended to take alendronic acid.  I did not take any bone meds but carried on with my walking, etc, as well as making sure I got the nutrition and supplements I needed for good bone health.  A subsequent scan has shown enough improvement that they are no longer recommending the scary drugs. cool

       

    • Posted

      Hi , I have a question about supplements,, what do you take .. my Dr had not told me since I've been newly diagnosed PMR?

      Thank you

    • Posted

      Hi Tammy.  I think supplements should be tailored to individual needs, but in general we are advised to take calcium and Vitamin D.  I read that calcium hydroxyapatite is best absorbed by people on prednisone.  The other recommended one, generally for everyone, is calcium citrate.  Vitamin D should be Vitamin D3, I doubt you can even get any other kind now.  What I did after the dreaded prospect of osteoporosis reared its ugly head was go to an organic foods store which also sells health supplements, vitamins, etc.  I got a special formula designed for bone health and have been taking it.  Now I did stop taking the bones supplement this summer as I had a very high D reading - this is very unusual as most people are low.  I'm going to be retested again in about six weeks,but I started taking a smaller amount of the supplements again late in the summer.  I thought I might need a little extra magnesium for a while, as well as the Vitamin K2, but now I just have a good soak with Epsom salts every few nights.  I do take Vitamin K2, a mixed tocopherol Vitamin E, full spectrum B vitamins, plus, for my osteoarthritis, glucosamine.  I also need iron, so take a liquid supplement.  And lately I've been taking a kelp tonic, supposed to be anti-inflammatory and has about 50 micronutrients in it.  It may be coincidence but about a month after I started taking the kelp I began to feel some slight glimmerings that my energy levels were picking up.  So it may be helping my adrenals and thyroid now that my pred dose is so low.  Something for you to keep in mind, perhaps, if you get fatigued when your pred dose becomes low (below 5ish) For a while I took cod liver oil, I wanted the retinoids in it, but had to give it up because of course it was also giving me more Vitamin D!

  • Posted

    Thank you for thinking 50 is young. Lol I'm sorry you have been diagnosed with PMR. But you found a great group that will give you great info about the disease. Good luck.

    • Posted

      Didn't think I would be saying 50 was young mysef haha. But reading for PMR makes me young so at least there is one positive in all of this smile 

  • Posted

    A drop of 25 to 20 is probably too much at one time - try 2.5mg and see if that helps the pain returning. You may even need to reduce 1mg at a time - you really do need to ask for 1mg tablets and they are available.

    The pred has cured nothing - it is only managing the inflammation which is caused by an underlying autoimmune disorder attacking your body by mistake, not recognising it as "self". The autoimmune disorder will continue chugging away in the background for anything from 2 to 6 years for 75% of patients so as long as that continues you will need some pred but you won't stay at this level for ever. Having established the "best result" after 3 or 4 weeks at the starting dose you will take that as your reference and then reduce slowly (no, NOT at 5mg at a time!) to find the lowest dose that gives the same result.

    To start with that may still be above 10mg - but with time the activity of the autoimmune bit seems to fade and you will get to a lower dose as long as you are sensible and careful about what you do and how you reduce. The smaller reductions also make identifying that dose ore accurate. Even 1/2mg can be the difference between the pain being well managed and not - so 15mg may be too much but 10mg not - and the right dose 10.5 or 11mg. 

    The pred only manages the inflammation - the fatigue is up to you to manage with lifestyle adaptations and pacing/resting. As I've said, the actual disease process is still ongoing and leaves your muscles unable to tolerate acute exercise - and I'll bet you immediately went and tried to do all the things you haven't been able to do all summer as soon as you felt better? Don't! You will be able to more eventually but it will take time and patience.

    It is possible that you have additional back muscle problems besides "just" PMR. Myofascial pain syndrome is commonly found alongside PMR and can cause a lot of shoulder and back pain - I found that after a few months at 15mg it improved a lot but it does return at lower doses. I have had other approaches that have helped it a lot, making it possible to manage the PMR itself with far lower doses of oral pred.

    I know you want to get off the pred , everyone does, but as long as the disease process is active you need it to manage the symptoms. Reduce it too far and the symptoms will return - no ifs or buts. And only pred does the job. It really isn't that bad - honestly! It does have some unpleasant side effects, 82+ listed, but no-one gets them all and some people get next to none. At present I'd say I have none - I had few on prednsiolone originally and horrible ones with Medrol which I was on for about 9 months - weight gain, totally Cushingoid, hair and skin went mad, muscle wasting, black beard - but all went when I was switched to another form of pred. I went on a low carb diet and lost 36lbs in weight and my skin and hair are back to normal. I have been on pred for over 7 years and have no diabetes, no osteoporosis (slight drop in bone density but have never taken alendronic acid), no raised eye pressures. Others have also avoided weight gain by being strict about carbs.

    I had had PMR for 5 years before pred - I was 51 when it started but it wasn't recognised. I put on a lot of weight just with the inactivity - it isn't just pred that can do it! I was still at the gym 5 times a week even with PMR - it was the only thing that kept me mobile without pred. I did aquaaerobics every day and adapted Pilates and adapted Iyengha yoga - I had had to change gym to get a warm pool as I simply couldn't use the machines and do the classes. The first thing I noticed was finding it difficult to do step classes. You can still exercise - but you have a new normal and you will take far longer to build up trained muscles (the tiny tears don't heal as well) and take longer to recover. It really is nOT worth trying to push yourself - if ever "no pain no gain" was plain wrong (and it is something NO good trainer should say) it is here in PMR. I still ski-ed but it took me a couple of months to get to where I would have been in a couple of weeks previously. 

    You will find loads of useful links here:

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

    including to information about pacing. In the replies section is a slow reduction scheme that has been used by many patients on the forums and support groups to get to low doses more easily than using other approaches. Patients almost never flare - until they get to their aim, the lowest dose that manages the symptoms.

    Do your reading - and as MrsO says, ask the questions. 

    • Posted

      Wow Elieen, thank you so much for all this informaton. It is living with a lifestyle change that will be the hardest and I am a little fearful that the pain will come back. I was a 'no pain no gain' kind of gal so will have to re-programme myself haha. I am seeing the doctor again this week and more blood tests so will ask about 1mg tablets and look again at the pacing. I did see it and thought it sounded sensible. It is great to have found a group that I can ask the questions and get answers that I am not getting from the doctors smile 

    • Posted

      You get them here because we have the t-shirt and have seen the film! Doctors have only theoretical knowledge - and sometimes a decided paucity of that! 
    • Posted

      I have actually got a t-shirt courtesy of Catie/Chris's support group, but love the thought that there might be a film running on PMR/GCA - producer EileenH perhaps?!

    • Posted

      Hi Elizabeth, I am so sorry you have been diagnosed with PMR. My rheumie gave me just the 5mg tablets. They were coated, are yours? You can also get 2.5mg coated which he did not tell me about and wanted me to reduce from 20mg to 15 mg in one go. 1mg are also available uncoated that can be cut, the coated ones cannot be cut. It is recommended you should not reduce more than ten per cent at one time. My rheumie seemed desperate for me to get below 10mg, he did not seem to care about me being in pain as I was reducing too fast! 

      You are right, PMR is life changing, in some ways it is good to look at things in a different light. I became a nutrition nerd and bore my friends silly.

      Good news you are having a Dexascan. Have you been given vit D and calcium supplement? It is a good idea to take them with pred to help bone density. You could ask for a vit D test too. I found I was deficient when I insisted on one. My rheumie said it was not necessary. I am not sure how much he knew about PMR! 

    • Posted

      Hi ptolemy, my tablets are not coated and I had not thought about cutting them. Good idea! I would love to hear any nutrition suggestions you have so send them my way smile I'm eating plums as I've heard that they may help haha. 

      No, I've not been given any vit D or calcium should I put myself on them? I will ask vit D test at my next blood test. Thanks for the suggestions smile

       

    • Posted

      Plums should help.  Prunes are often recommended, the dried form of plums, specifically because they contain boron, one of several nutrients necessary for good bone health.  Most importantly make sure you are also getting sufficient magnesium, many calcium formulations also contain enough magnesium to balance the calcium but if you are relying on the prescription the UK members of the forum take I'm almost certain it only contains D3 and calcium.  Don't take more than 400-500 mg calcium at one time and don't take it at the same time as pred.  Another important nutrient which we are often deficient in because hard to get from standard Western diet, is Vitamin K2 (not K1 which is readily available from leafy greens and although important is not useful for bones).  What K2 and magnesium do is make sure calcium goes to the bones where it belongs.  

    • Posted

      Sour cherries and beetroot are supposed to be good too. Also turmeric. In fact a good balanced diet minus simple carbs is always good news.
    • Posted

      I think those items are more specifically to help with inflammation rther than bone health - but also good recommendations!

       

    • Posted

      They are recommended for PMR so I assume they are anti inflammatories.
    • Posted

      Right.  My comment earlier was addressing the osteoporosis concerns..... smile

    • Posted

      I was replying to Elizabeth's comments on plums. 

    • Posted

      moi aussi....  earlier in this thread there was discussion of steroid induced osteoporosis, I just thought it as well to clarify what each of us was referring to.....  It appears that plums help both conditions.
    • Posted

      I must admit it is very difficult to know what is being replied to on this board, particularly when they get long and go off piste so to speak. 
    • Posted

      In fact joint vit D and calcium supplement is the one supplement that should always be recommended. I get mine on prescription now but you can get it over the counter as well. 

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