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New to this and scared

Posted , 8 users are following.

marlene07721
marlene07721

hi all,

 I woke up Wednesday from a short nap with sever shoulder pain in both shoulders.  Couldn't imagine what from.  I had been having slight frontal headaches all week but thought maybe this was allergy related, I never get headaches.  I decided to go to my local Er and the dr. Only gave me a test for possible tick Bourne illness but he said it seems I may have PMR and did give me pain med and a shot of torodol.  Not feeling that this was enough I went to MGH yesterday and got chemistries done.  Very high inflammatory markers which I never have.  The scariest part is that I seem to have all the symptoms for PMr, but I also have so many other health issues and I'm a only 62!  One of these issues is an eye problem which I cannot ever take steroids for or the problem can also cause blindness,  I am between a rock and a hard place.  Possibly need steroids for PMR and to,prevent temporal iritis but am. Im not supposed to take them due to central serous retinopathy, the other eye problem.  

I haven't yet been diagnosed with PMR and may be getting ahead of myself, but I really think I do.  I have appt. with pcp this week and my opthmologist.  

I am am very scared of going blind!  In the meantime I just took pain med. so I have some relief.

thanks everyone for listening.  Anyone else in the same shoes, unable to use steroids?

 

0 likes, 31 replies

31 Replies

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  • jeanne333
    jeanne333 marlene07721

    Posted

    I also have many health issues besides the PMR but my eye problem a hole in my left retina and folds in both retinas, s helped by prednisone. As for side effects of said prednisone, the side effects of other meds. is just as bad, was worse for me. The RA put me on one and I had 4 severe side effects and ended up not being able to walk and bleeding excessively under the skin in my legs, pain and extreme fluid retention. I hope you can take the pred cuz it will take care of the pain and inflammation. Fear not! You will have good days and some not so good days. so listen to your body and take each day depending on how you feel. You are not alone, the members on this site, have your back, the advice and support they offern, is a great morale builder.
    • marlene07721
      marlene07721 jeanne333

      Posted

      thank you Jeanne.  I have an apt with the pcp on call tomorrow as their nurse called me today and doesn't want me to wait for an apt.  

      I also have osteoporosis, am on estrogen blocker for breast cancer since 2013 so steroids would be horrible.  I had Reclast infusion for that.  It just doesn't end!  

      I have to to figure out how to get back to the main blog of this site.

  • kay97415
    kay97415 marlene07721

    Posted

    I have wet macular and regularly have eye injections and photos to check my eyes. On my last visit the doctor thought I may have central serous retinopathy and am at the hospital again this week to have a further check. They believe it may have been caused by the steroids.

    I have had PMR for 2 years and currently moving slowing from 9 to 8mg. 

    I too am worried as if confirmed will need to wean myself off pred and worried how the pain will be managed. Apparently the eye problem can then be reversed or partly reversed. I will let you know how I get on at the hospital and what they say I should do.

     

    • marlene07721
      marlene07721 kay97415

      Posted

      Thank you and good luck!  

      Btw, do the symptoms of PMR sometimes go away almost as fast as they come?  I am feeling much better and all the crazy symptoms have gone away, including the low grade fever, at least for now. They started on the 4th and today is the 7th.  Who know what the morning will be like.  This morning I had such aches going down the back of my thighs and legs I had to yget out of bed and walk up,and down the street, staying still was horrible.  Much better tonight.  

      I am still not diagnosed with this.  Will TRY to get to see a rheumatologist asap. Will see the eye dr. On Tues.

    • marlene07721
      marlene07721 kay97415

      Posted

      Also my CRP was soooo high at the ER at MGH on Friday; 131.1.   It's always been between 1-11.  

      Very frightening and I'm try not to stress!  Right!  

    • kay97415
      kay97415 marlene07721

      Posted

      Marlene my PMR only improved once I started on the pred. Good luck with your eye appointment. Yes I am trying not to stress too.....apparently stress is not good for the eye problem so we must keep calm! 
    • marlene07721
      marlene07721 kay97415

      Posted

      Well I seem to be fine this morning.  No symptoms, no temp.  Just PTSD!  I am so anxious about this that I took something to relax, mainly due to the only one real treatment available.  I am so tired of dealing with all my medical issues and I feel like this is a time bomb.  

      You are right in that stress isn't good for csr of the eye or anything else.  Not sure why I'm not symptomatic now, unless it's a tick disease which I'm on doxy for until I get the test results back.  

      I also wonder if my first shot last week for awful springtime allergies might have caused the possible PMR symptoms?  

      Well, I'm  just relieved to feel ok this morning, am very unsure about everything at the moment and pray that I continue to be asymptomatic. So strange!  

      I also have chrons and started an infusion 2 weeks ago.  I'm supposed to get my second one tomorrow but not sure they will do it yet because of my high inflammatory markers. Hope they've come down now. I really need to remain on schedule for that.

      Sorry about all the chatter, just feeling overwhelmed at the moment and need to vent.

      thanks everyone For being so informative and supportive!  

      Hugs to all!

       

    • Anhaga
      Anhaga kay97415

      Posted

      Although they are not the magic bullet pred is, in my reading it does appear that there are some other strategies for dealing with the pain of inflammation, so do not despair.  Have a good long talk with your various specialists.  💕
    • kay97415
      kay97415 Anhaga

      Posted

      Thank you for your kind words. There is just a complication with my wet macular as they changed the eye injections from leucentis to Eyelea just prior to this problem and I believed after 4 years with good control this was the cause of the problem but they feel it's the steroids! I am rather sad about the whole situation but will speak with the eye hospital again later this week and go from there. It's always a problem juggling too many health issues at the same time, i.e. controlled epilepsy, menieres, the polymyalgia, glaucoma and the wet macular. I belong to the Macular Society so maybe I Will ring them for support too. Thank you for listening. Kay

    • Anhaga
      Anhaga kay97415

      Posted

      It is a tough row to hoe, that's for sure.  At this point it seems preserving your vision should be the priority.  I do hope that you are able to do this without stirring the PMR beast too much!  All the best.  ??

  • snapperblue
    snapperblue marlene07721

    Posted

    Hi, Marlene:  First, you may in fact be jumping the gun if your diagnosis is not defintie and you have had symptoms only a few days.  If your symptoms go away in a few days, it is probably not PMR, which tends to stay around a lot longer than that, and a lot longer than any of us want it to.

    Second, while steroids are the usual treatment, there are some backups for those who cannot take them.  Some on this forum get relief from methotrexate.  Another drug being investigated is tocilizumab, but I am not sure whether it is approved (or even proved successful enough to use.)

    If MGH means Mass General, Dr S. Unizony is conducting research there on tocilizumab for GCA (giant cell arteritis/temporal arteritis) . Your doctor might be able to consult with him on whether this is a reasonable alternitive for treatment of PMR.

    Best of luck!

    • marlene07721
      marlene07721 snapperblue

      Posted

      Well I am somewhat shocked in that Mass General Hospital., MGH, reported that I tested positive for Lyme disease!  Every symptom I had was like the ER dr. Said for PMR.  Realizing that I feel much better after 3-4 days while taking doxycycline was suspicious for me not having PMR.  I DONT KNOW WHICH DISEASE IS WORSE. Lyme is crazy too and my 35 year old daughter has been on disability from it for awhile.  Hopefully I caught it early enough to not wreck my life like others I know.  Still it's weird how all the symptoms I had were exactly like PMR.  also most tests don't come back positive, so at least I know what's going on.  Freakin ticks!  Never saw a bite, rash, circle, tick, nothing!

    • Anhaga
      Anhaga marlene07721

      Posted

      Isn't that one of the things about Lyme?  It can mimic other diseases.  Sounds like yours has been caught early.  All the best!  Please keep in touch and let us know how you get on.

    • marlene07721
      marlene07721 Anhaga

      Posted

      Yes, Lyme does mimic many other diseases and its often very hard to diagnose. The testing is still not good and many are false negative. Thank goodness mine did show up positive the first time! Whew!  So many people suffer needlessly because they go undiagnosed.  However even the doxy doesn't work for many if they have recurrences so a lot of work needs to be done.  In Mass. They finally signed a law making insurance cover long term antibiotic therapy if  needed.  

      I wish everyone here good health, no pain, better meds, no relapses and so on.  

      I will continue reading this blog because I am very interested in what one might use in place of steroids with the eye condition, CSR, that some of us have.  One never knows when those might be neededrolleyes

      Bye for now.

       

    • Anhaga
      Anhaga marlene07721

      Posted

      I know someone living in Pennsylvania who took literally years to get a diagnosis.  I haven't heard how he is lately, but I think he was relieved to finally be getting treated for the right thing.  I hope you are soon as good as new!

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