Diagnosed with PMR

Posted , 7 users are following.

I have been diagnosed with PMR on Dec 10 2016 . Not quite sure of the cause or how it came to be but in the summer 2016  I had trouble swallowing food to the point  that it would not get past my esophagus.  Resulting in having to get rid of the food or vomiting.  If I had a glass of water near by I would be able to get my food down with noticeable discomfort. 

  So off to see my doctor with persuasion from my better half.  The doctor sent me for a barium swallow at the hospital. Results were a narrowing point part way down my esophagus.  

  Now October 2016 I have been sent to a Endoscopic Surgeon for consultation. He recommends having a scope done scheduled for late  November. Results are extreme inflammation of my esophagus and stomach.  He tells me to start taking a stomach pill called Pantoloc. 40 megs twice daily. 

   Within a week is when my pain started in my legs and shoulders start.  So I went on line on a Saturday night of agony in bed unable to turn either side of my body and found that one of the side effects of Pantoloc is soreness in lower and upper body. My solution was to quite taking the Pantoloc. 

   Back to my specialist first thing Monday morning only to find he is gone on holiday for the Christmas season. So I tell the secretary that I am not taking Pantoloc anymore because it caused a reaction. She would e-mail him and let him know. 

  Back to my GP Tuesday morn. She recommends waiting a week to see if the pain goes away. The pain does not go away but not as intense with Pantoloc. During that period I took Ibuprofen and it helped but not 100%

   Back to Doctor Monday pain is still there. She give me a couple of arm and leg tests blood test and Serium  protein was at 31. normal is .3

Diagnosis PMR solution

   

0 likes, 10 replies

10 Replies

  • Posted

    Hi I am still fairly new here still learning about PMR .. so I don't have an answer for your questions but ... you were the first person I've heard talk about your throat .. my throat has been bothering me for probably about six months to where it's hard to swallow food or I choke a lot... my daughter told me I needed to get that checked, I did tell my doctor GP .. she told me oh it's just sinuses but now I see from what you said that I'm going to tell my rheumatologist and see what she says and get the test that you took because I am concerned and I have always been concerned since it started thank you for your post

    • Posted

      Hi Tammy4748

      i suggest you read about acid reflux and silent acid reflux. The Mayo clinic and Cleveland clinic websites have good info.  Symptoms include feeling of lump in throat, coughing to the point of choking, clearing throat a lot, sinus symptoms, etc.

      Prednisone can cause an increase of stomach acid and therefore the reflux symptoms. 

      Look back at previous topics on this forum forum and find the one called silent acid reflux for lots of helpful suggestions from forum members.  

      I do hope you get a doctor to check out your throat just to make sure something else isn't happening......but your symptoms do fit reflux and that's something you can make changes to improve right away.  Just check out the clinics' websites to get started. 

       

    • Posted

      It could well be due to the PMR - I had swallowing problems and several of us on another forum had a laugh together recently about our sneezing/choking/coughing all at the same time fits with some foods. If the PMR is also affecting the arteries in the chest it can lead to inflammation of the throat and neck, post-nasal drip and the rest.

      However - your daughter is right and I suggest she goes to the doctor with you. Somehow it seems to concentrate their minds...

    • Posted

      Thank you Eileen, I will get this checked , also I did have a significant amount of pain in my chest right before I was diagnosed, I thought I was getting pneumonia.. I didn't know at the time I had PMR.. the Prednisone took it right away though so it all make sense now .. ..

      thank you 😊

  • Posted

    Let me say first that I'm sorry you've been diagnosed PMR. I've actually only had it for 6 months but I've only been being treated by a rheumatologist for 4 months. But I've been on this site ever since my GP told me I had PMR.

    Anyway about the choking I've had my share of problems with swallowing but I have dry mouth issues and I believe I have Sjogren's syndrome and because of my dry mouth I have the swallowing issue. I'm throwing that out there in case you may have a dry mouth issue too. That could be a reason which would have nothing to do with PMR.

    I'm sure many others will get on here with advice for you. Hopefully you'll meet Eileen. She's this site's Guru on PMR. She has a lot of good information. There are a couple others out there with good information also. Good luck on your PMR Journey.

    • Posted

      Hi amkoffee

       So lnever quite finished my story as I had to go out. Diagnosis PMR Solution from the Doctor was to put me on Prednisone starting at 20 megs per day 10 in morn 10 at night. After a about three days the pain has not gone away 

        Back to Doctor but my Doctor was away for Christmas holiday so they put me with a new Doctor which was fine. He said that I may not have Pmr necessarily and that it is somewhat of a mystery disease and not always easy to diagnose. Anyhow after further discussions he increased my Medication to 30 megs. per day. That dosage has worked for me and I have no pain. My concerns are the long term affects of this medication. Having not met anybody with "PMR " I am glad to have found this site to be able to reach out and find more information from other sufferers.  

        Thank you amkoffee for your response about the choking and dry mouth which I don't think I have. I see my specialist on January 26 and I will have another scope of my esophagus and stomach done. 

        I think you are right I don't think my esophagus issue has anything to do with my Pmr. I was just telling my story how all this PMR so called mystery   disease started.  

       Thanks amkoffee and good luck to you also

    • Posted

      The 10mg morning and night may not have been enough to work - a single dose is more effective in managing the inflammation which is the crux. 

      I am of the opinion that the long term side effects of pred are often over-egged by many doctors. Once you have the existing inflammation under control you will reduce the dose by tapering slowly (not more than 10% of the current dose at a time) to find the lowest dose that manages the daily dose of inflammation successfully. Done carefully you should get down to 10mg or even lower. 

      I have been on pred for 7 1/2 years - for a lot of that time at above 10mg. I gained weight with PMR itself because I was pretty immobile for 5 years and unable to exercise properly. Didn't stop me eating though! I gained no more weight with one form of steroid although the fat transferred itself to the usual places (face, neck and midriff). I was switched to a different sort when I moved to Italy - and gained a LOT of weight. Switched to yet another sort I lost all the weight by cutting carbs. In all that time my bone density has barely changed, I have BP problems for another reason (partly due to the PMR) and there is no sign of diabetes. The side effects are NOT inevitable and many can be helped by being sensible and a few lifestyle changes, which you need to do because of the PMR anyway. PMR itself has a lot of long term side effects if the inflammation in your body is left untreated - pred avoids those.

      But if side effects appear that worry you - ask here. Someone will have been there - and survived!!!

    • Posted

      Thanks Ellen for your response. Your first response of a single dose has me curious.  I have seen three different Doctors since my diagnosis only because of Christmas Holidays. 

        Doc # 1 subscribed 10 in morn 10 at night for 8 days  that did not work 

        Doc # 2 subscribed 15 in morn 15 at night. No pain and has maintained so for  3 weeks

       

        Doc 3 wants to start reducing tomorrow to 10 in morn. 15 at night to see how my body responds. 

        So do you think I should take my dosage of 25 megs in one dose ?

        

    • Posted

      The standard advice for pred being taken for PMR and GCA is to take the whole dose as a single dose in the morning. This achieves a bigger hit on the morning source of inflammation and allows longer until bedtime to try to reduce the effect on sleep.

      Taking it all at once also makes reducing simpler - because you need to go realtively slowly to avoid missing the dose you are looking for or causing steroid withdrawal pain which is so similar to PMR you can't tell which is which. But it sounds horribly as if your doctors don't realise that PMR is a chronic illness that requires long term pred - a few weeks of any dose won't sort things out, you are going to need pred for at least 2 years and possibly longer.

  • Posted

    I too am sorry you've been diagnosed with PMR, but am very glad you've found this forum which is honestly invaluable with regard to the information you will get but also the empathy from fellow sufferers. The dosage of 30mg pred does seem quite high but the telling thing is that it took the pain away. As Eileen will say, PMR is not the worst thing we can have as once its under control you can lead a pretty normal life but you do have to be careful not to overdo things as it can knock you sideways with fatigue. None of us want to be on pred but it is a marvellous drug for taking down the inflamation caused by PMR but it does have its side effects unfortunately. You will be able to reduce your dosage as you go along and with any luck you'll be able to manage to keep things at bay with a low dosage. Reducing should be done very slowly in order to avoid any flare ups. Good luck to you on your journey, keep on touch to let us know how you are getting on!

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