Having problems with various things

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hi to all, and a big hello to EIleen after a absence of nearly one year. A lot has happens over the months. Still having problems with reducing, I have had a couple of flares and the hospital just want me to reduce quickly, also now on 20mg of methotrexate which is not going down well. 

I will ill not reduce fast, and told them I am using the slow method, which I tried to explain but I am banging my head on a brick wall.

it is nice to hear all your news and now my laptop is working I will be able to join in, missed you all. Regards madmags

 

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23 Replies

  • Posted

    I have been computer deprived a couple of times over the past year, and it is amazing how much we miss the social media aspect when it's not there.  How long have you been taking the mtx and what effect is it having, if any?

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    • Posted

      Hi I have been on meth for a year had problems with a cough and had a cat scan confirmed nodules on my lungs they are doing another soon and think it maybe caused by it, and also a permanent cough which I never had. Also had to have a few extra blood test over my liver been high. But what the heck worse things at sea.
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    • Posted

      If it hasn't been helping the taper (it often doesn't help although some people benefit) you could just tell your doctor you don't want to take it any more.  I have a relative with RA who was on mtx for years but had to discontinue because of liver problem.  Her liver function has now returned to normal.  I think it might have been a while, though.  A year?

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    • Posted

      They gave me it because I have RA and it is supposed to be for that as I have literally  been unable to walk and my hands have been useless, but I must say since they upped it to 20mg it has helped a lot, and I now can walk over a mile a day😀

      My my grandson thinks it is lovey his nan can chase him waited 15 years for him. 

      I am am dur to go to chapel alert on for a check up and will be bringing these up with the doctor my liver count went from 15 to 30 three minutes in 3 months so we will see.

       

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  • Posted

    Hi Madmags, sorry that your taper is not going well. Good luck on the rest of your journey.
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    • Posted

      Welcome back but, as others have said, we know you'd rather not be where you are.

      Having survived eight years of PMR ( 3 + 5 with 5 in between ) I count myself fortunate and sometimes don't really believe I've been at zero Pred. for more than four and a half years. My one remaining side effect is my fragile skin but maybe I'd have that anyway. There is light but sometimes it seems a long way off.

      I still check in regularly as I hope my story might be encouraging to someone. I do the same on the endoscopy thread in the hope of alleviating the panic felt by some at the thought of the investigation. But one thing that stands out in both cases is there is no one answer for everyone much as some clinicians seem to try to make us think. Stay strong and best wishes and keep chasing that grandson.

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    • Posted

      Yes Madmags, I am doing very well thank you. Now that my passion skiing is over I am back riding my bicycle. Continuing my slow DSNS taper, think positive and smiling.☺️
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    • Posted

      Just got back from my first visit with my new Dr. We moved here (Victoria Canada) 1 yaer ago from Edmonton Canada. I have had PMR for 3 years. Started at 15 mg. Worked like magic. Pain and stiffness gone...little niggles when i slowly taper but they go away after a few days. Down to 2 mg.My Dr. Was okay with me determining when and how much to taper...although she would have liked me to taper more quickly.

      Last year was tough. My husband and i both lost our mothers and we moved. I haven't needed a Dr. As i got my prednisone first from my mothers Dr. And then from my daughter who is a Dr. (I was away alot first with my mom and then my husbands mom.)

      So i was feeling that im doing really well. I had no flares and no side effects. My new Dr. Said its very unusual to still be on prednisone aftet 3 years ...really??? when i suggested that PMR can go on longer than that shesaid shes the Dr. And she knows. She said she knows what i need and i didnt ..???She also said the dose for prednisone goes according to a patient's weight. Its very hard to get a Dr. Here so I think i will stick with her...hope the PMR DIES out soon...and I wean off the pred...and nothing bad happens - cant see myself working with someone who doesn't think i have anything of value to say about my own health!!

      SHE. SAID DONT TALK TO FRIENDS OR READ ON THE INTERNET...what an arrogant woman!!

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    • Posted

      Pam, your doctor sounds a lot like mine. I have soften mine by providing article found on the website or others from research from reputable institutions, with facts they cannot deny. So far it seems to be working, 10 months ago, I explained the situation to my primary and she told me if the other doctor dropped me she would see that I got my Prednisone. Good luck, stay calm, positive and try to smile.☺️
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    • Posted

      Even if it is difficult I'd be trying to find another less obnoxious person who has at least done some reading in the subject - because she is obviously totally ignorant. And, I suspect, knows it and doesn't care. Because when you talk to friends and go on the internet you find out the truth - not everything on the internet is sensationalist fake news. Doctors use the internet too.

      This is from the internet - but are the international recommendations from the top experts in the field who are members of EULAR and the ACR and based on EVIDENCE:

      https://www.rheumatology.org/Portals/0/Files/2015%20PMR%20guidelines.pdf

      and this

      https://www.practicalpainmanagement.com/resources/news-and-research/polymyalgia-rheumatica-steroid-side-effects-new-findings

      which is a news magazine aimed at healthcare professionals reporting a paper with evidence-based research by one of the top PMR guys at the Mayo Clinic showing that the median duration of PMR is 5.9 years and providing the percentages of patients who get off pred in various times. Not many under 3 years really.

      The really top people all agree on the importance of shared responsibility in managing rheumatic disease, including PMR. Without it patients get nowhere and suffer as a result. 

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    • Posted

      I'm speechless and that doesn't happen very often!  I'll say a prayer of thanks for the GPs in my surgery.

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    • Posted

      If your province is anything like mine you are probably stuck with this doctor for the time being, but I think Michdonn and Eileen may be onto something.  See if you can, gently and tactfully, educate her.  If she proves to be an impossible case, start looking for someone else.  At least for now you have someone who will have to give you your required pred prescription so it could be worse, I suppose, although at the very least one expects to be treated with respect by others.  
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    • Posted

      Anhaga, being persistent, having the fact, a number of articles seems to be working. The last few visits were no problem at all. Staying positive and pushing nicely seems to have worked. And that is with a doctor who told me she was the doctor and I was going to follow her direction or go elsewhere.

      ☺️

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    • Posted

      Eileen, I've heard everyone acknowledge your wisdom over the past 3 years and now I get to appreciate it myself. thank you for your words and for the links. I have printed out the articles and will highlife pertinent info (I'll be ready and armed....should I need to be..next time I go to the Dr. It really is difficult to find a Dr. here - it took us a year and she's it! The other option is going to a clinic and potentially seeing a different Dr. each time.) Thanks everyone else for your comments. I was so mad when I left the Dr.s office yesterday - but cooled off on my bike ride home. (It really is so beautiful here in Victoria BC. So many things are in bloom.) Good news is I have used the DSNS and today is the beginning of 1.5 mg...and I feel good, so maybe this time I will get to zero....I know that shouldn't necessarily be my goal, but to avoid future difficult appointments with my Dr. it would be nice to get there. She did give me a 4 month supply of prednisone. I will try to educate her, stay positive, and just expect mutual respect. And go from there. Cheers everyone.

      Anhaga, you mentioned provinces....are you from Canada??

      Pam

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    • Posted

      Nova Scotia.  Where in the late 60s I believe we had one of the best medical systems in the country, which would mean also the world.  And I think because politicians have no collective memory of why we have medicare it's all gone to wrack and ruin.  It's thought there are about 100,000 people without a family doctor right now, and that's in a province with a population of fewer than one million.  

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    • Posted

      Nice to hear from a fellow Canadian. Sometimes i feel a little isolated - but I do love hearing about people s experiences in other countries.

      Isn't that sad. So many without a family Dr. I think we should be training more Drs. Or perhaps...whats the term... nurse practitioners.

      Anyway,hope you have a good day.

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    • Posted

      It's more complicated, because in NS at any rate the general practitioners are not paid as well as specialists or hospitalists, plus there are arcane rules about where and who can practice.  I think it's going to take an intelligent government and at least a decade to sort out.  Ironically I can thank PMR for getting me a new doctor after my old one retired and an interim (useless) one moved away because I was in such terrible shape when I turned up wanting to see the duty doctor and being told I wasn't a patient there (only been going to that practice since the '70s rolleyes) that the receptionist took pity on me and got me in with one of the doctors who wasn't accepting new patients.

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