At a loss

I started noticing pain in one shoulder at the beginning of October and then it moved to the other shoulder as well. Then pain began in my hips and thighs. I thought it was from Pilates that I just started. Went to a Rheume and she said she didn't know what it was and sent me away. I googled and came across PMR. I ran to my physiatrist and demanded some steroids since I was in a good deal of pain. I just turned 53. I am use to being very active... gym easily 4x / week. And now I can't walk normally

I stared with 8mg of methylpredisone for two weeks. Had blood work and went back to the Rheume. The Sed rate was normal while the CRP was 5.2. Rheume said it wasn't PMR. Pain continued to get worse. She prescribed 20mg of prednisone .. still had pain. Then went up to 40mg. Within 3 days Most of the pain was gone but still had a little yet my face blew up like a chipmunk. I also broke out on my face. My hands shook all day and had diarrhea with blood in my stool and hemarroids. And I sweated all day and all night. I couldn't concentrate at work

Since Rheume didn't believe it was PMR I tapered completely off the prednisone .

Had blood work one week after completely off.. both tests normal. Had blood work again after three weeks off pred and the CRP was a little over two. Rheume still doesn't think it is PMR and thinks I should see a neurologist

I've been off pred four weeks. Taking Celebrex and Cyclobenzaprine. Pain was unbearable last night and this morning.

I can't get down to the toilet, pick up after my dog or even brush my teeth without agony.

The pain is now also in the knees ... front and back and my wrists are beginning to hurt.

I've been crying since last night. I can't Iive like this. I popped 15mg of pred this morning ... don't notice much of a difference.

I have appointments with my internist and a diff Rheume tomorrow. More blood was taken... tested for Sjorgens and Lupus. Don't know the results yet but based on everything I've read, it really does sound like I have PMR.

Any advice ???

Can all of you work a full time job?

I'm so so scared. I'm out of work since end of JAN and need to look for a job but I can't even think about that as I can't even properly function.

Anyone know a PMR expert in NYC who takes Cigna??

Thanks for any help!!!

16 Replies

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  • Bonnig, I feel for you. I've been on Prednisone for GCA and PMR for 26 months. It's been tough. Your symptoms don't seem to point to anything in particular. At least not anything I know of. Normally, 20 mg of Prednisone would take care of PMR quite quickly. However, you've tapering at such a speed. That alone could throw you into a Flare There are many on this site who know more. I'm sure they'll come along to advise. In the meantime....I can just tell you what I would do....I would go to an ER. ( are you in the states ?) Some testing could begin and you could be given pain meds. If the pain meds work....it's probably something other than PMR. PMR only responds to Pred.

    Hoping and praying you'll be out of pain soon. CJ

  • Thanks so much for replying CJ.

    I'll wait to see the docs tomorrow. I've had tons of blood work done... maybe it will show something this time.

  • Hi dear you are not alone I am have ny the similar problem too.

    I am completely lost with these weird symptopms.

    here is my story .

    First I am 38 years old female and I've seen diffrent doctors and done many blood works just to figure out what I am dealing with. But up to this day none could tell me what's going on with me. So I began researching on line hoping that I can get an answer to my issue. So I thought to come here and ask you my question since you all are dealing with the GCA and probbebly know even more than doctors.

    Here are my question:

    Does eye issues come and goes i mean if it's stays permeatly? Eye issues with GCA or when it begins is it sudden?

    Does the vision change with any physical movements such as beding down, pulling or laying down? ( my vision darkenes if I do those movements)

    Skull tenderness is it always there or it also comes and goes? What about massaging the sensetive area does it help the tenderness or not st all?

    ( I sometimes grab, pull and hold on to the hair in that area to reduce the pain sometimes works and sometimes doesn't)

    What about headache does it stay all the time or goes away?

    Does massaging the back and the neck subside the pain? Or massaging won't work?

    I just came back from ER with no answers. They only think I've got was we don't know.

    I am crying and scared as well.

    😭

  • Dear Mel I am so sorry for your suffering. I can't really help you but very much as I'm not a medical person but as to the sore scalp mine does fluctuate but is always slightly tender at best and really sore at other times. I have had PMR and suspected GCA (at the very beginning 6 years ago). All the symptoms fluctuate depending on how much stress you are under both physical and phsycological. You do sound so very stressed. Others with more knowledge than me will be on line soon and will be able to help you more but I send you all my best wishes for a speedy diagnosis. Anne

  • If it took 40 mg of methylpred to get a result it does cast doubt on a diagnosis of PMR. It generally responds well to 25mg or less (though, to be fair, 20mg methylpred did not a lot for me and a lower dose of prednisone not only was more effective but had far fewer side effects).

    You have to be patient though - autoimmune disorder diagnoses aren't made quickly as there are so many different ones that have similarities. And there aren't really any "PMR experts", just rheumatologists who are better or less good at their job like all doctors.

    I'm afraid most of the members here are in the UK, it is a UK-based site like all 3 PMR forums so I doubt there will be anyone who is in NYC who can help.

  • Hi. I live in NJ and see a doc in fair lawn. Was chief of rheumatology at Mt Sinai. Dr. Zalkowitz. Not sure if he takes China but his associate may. He's very good. If u want more info let me know

  • I meant cigna

  • You can edit - click on the right hand box with the downward facing arrow and you get options.

  • Dear Bonnig,

    So sorry to hear you are suffering. Where do you live that you could get to see both a physiatrist and a rheumatologist at the drop of a hat? It took months and months for me to get a referral to even one. And then rheumatologist made me go on a trial of Celebrex and blood work before I got even a sniff of prednisone. It was a script of last resort with my docs, and certainly not enough pills to be yo-yoing between 40 mg and 15 mg .

    You are very adept at internet to come up with your own PMR diagnosis. I must admit that even after 18 months of tests and visits to my family doctor I was quite surprised to hear the long awaited Rheumatologist suggest PMR. I had never even heard of it and had to get him write it down!. I still don't know anyone else who has it....other than my good friends on this forum.

    I wish you well on your journey. You have connected with a fantastic resource for PMR sufferers: sensible advice, truly caring and compassionate human beings who will lift you up when you are down and shore you up when you have to face that sceptical MD.

    Regards

    Dorothy

  • So many thanks to all of you who replied!!!.

    The 20 mg of pred I popped yesterday made such a difference. My neck is completely normal today. The shoulders, upper arm, hips and knees hurt but completely bearable. I'm a different person today. .. not myself mind you but 70% better than yesterday.

    Saw both my internist and a new Rheume today. My sed rate was normal for the fifth time but rose from 20 to 28 in the last three weeks. My CRP went from 2.2 to 4.8.

    Still no diagnosis of PMR from either and just more blood tests taken!!!!

    The new Rheume wants me to remain on my self dosed 20 mg per day for ten days and then go back and see her.

    I'd love some advice on the following:

    1. Will slow 30 minutes of elliptical and some weight work with 5 lb dumbells do harm? My muscles are atrophying I haven't done any strengthening in almost six months

    2. Is it typical to have worse days than others? The first Rheume said she hadn't come across this???

    3. Are any of you who've been on prednisone long time able to do what you use to?? I'm trying to understand if this is a life sentence and I'll never be the same ?

    So many thanks for your answers and support!!

  • 1) I really think 5kg weights are far too much, and so is 30 mins for a start - the pred has only relieved the inflammation that leads to the pain and stiffness, it hasn't done anything to the underlying autoimmune disorder which continues to attack your tissues and your muscles remain intolerant of acute exercise. You probably will be able to get back to it but you will need to start low and build up to where you were (or lower) slowly - you have a new normal to get used to. It isn't a life-sentence, for about 75% of patients the PMR goes into remission in up to 6 years, although it lasts at least a couple of years. There are people who have been used to cycling who still cycle and have done so all through PMR - but at first at a very different level to the competitive level they had been doing.

    You should be doing some exercise - but DOMS (delayed onset muscle soreness) is likely to be a problem, it is for most people if they try to do things that involve repetitive actions of the same muscle groups. You may manage it in 5 min sets - but I wouldn't start with 30 mins on the first day. I would try 5mins in the first day, rest the next to see how my muscles reacted, increasing the 5 mins by just a couple of minutes every other day to be sure I'm not developing DOMS.

    I know it sounds slow - but overdoing it and causing severe DOMS can result in weeks if not months of muscle problems. Like the way we recommend to reduce the pred dose, it may sound slow - it isn't if it works.

    2) - very common because you have a good day and do too much and so have a bad day the next day as your muscles protest. Has the rheumy ever asked her patients? I somehow doubt it!

    3) there are people who have got off pred and are back to their old pastimes - but there are few here, they are getting on with life. Often it is not at the same level as pre-PMR, they are much older and, I'm sorry, getting older DOES make some difference and your fitness level will have fallen over a period of up to 5 or 6 years. I don't think it is PMR that stops me doing what I used to do, I skied with PMR until a few years ago but stopped because of a whole constellation of other things, including injury and illness. I do most things I want to - I've abandoned a few other things but have found substitutes that are acceptable!

  • I suppose this gives me hope, yet deeply saddens me because I'm only 53 and was quite active. In addition, hearing all the long term side effects are terrifying, yet I need to know.

    So far the docs aren't convinced I have PMR, yet they aren't suggesting anything else. New blood tests should be back by Friday.

    I'd like to know if you've ever heard of CBD oil for inflammation? This was sent to me yesterday by my sister from a NP whose Mother is using it with good results.

    medicalmarijuanainc.com/inf...

  • thanks. i've been reading up on it and was looking to find out if anyone on this forum has tried it and found success?

  • The majority of us are in the UK where medical marijuana is not legal:

    "Access within the UK is limited to the pharmaceutical cannabis based medicine Sativex. This can only be prescribed to MS sufferers and is at your doctors discretion, so differing postcodes can effect access. It should also be noted that although the NHS in Wales will subsidise Sativex, the NHS in England will not, so typical treatments can cost up to £500 a month. All other cannabis use or production in the UK is Illegal. Please see our UK Cannabis Guidelines section for more information."

    CBD is probably going to be classified as a medicine in the UK

    motherboard.vice.com/en_us/...

    but there have been some scams in the interim - silly prices for junk basically. Most people in the UK with PMR are either retired with limited incomes or were working and struggle to do so as a result of their illness.

    I know a couple of people who find marijuana helps their pain in that they don't care as much, but I don't think I know anyone using CBD.

  • I've heard of it, no idea whether it works.

    There is no need to be "deeply saddened" - I was only 51 when mine started, I wasn't diagnosed for 5 years, I'm one of the small proportion who has long term PMR but I really don't feel I have a bad quality of life. I've given up skiing now - but not because it was physically beyond me with PMR. Many of us were pretty active pre-PMR, there aren't many couch potatoes here! On another forum we have cyclists. There was a guy on this forum who is back to mountain climbing and long distance running. His story is here:

    pmr-gca-northeast.org.uk/st...

    and you will find a load of other stories there too.

    I didn't say you WON'T be able to do things - I said build up slowly. By that I mean you may take up to several weeks to assess just how much you can manage but you may well be able to do a similar amount. But if you dive in and do the full monty straight away you may well regret it. I'm trying to protect you from making that sort of mistake so you don't get discouraged.

    There are 82 listed side effects of pred - no-one gets them all, some get next to none. I've had side effects but at present I'd say I have none that really bother me. I gained weight - I've lost it again. After 8 years of pred my bone density is fine, no sign of diabetes, no cataracts (unfortunately, I could dispense with one set of specs if I did), no raised eye pressures. My nails are better than they have been most of my life. And I can move and do things without pain - you have to look at the positives.

    In a year you will look back and see how far you have come. Everyone does. In the meantime, until you are feeling better - slow down and smell the roses you haven't had time to appreciate.

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