pmrandgca.myfunforum.org Forum Index pmrandgca.myfunforum.org
Charity Reg 1138409.-Website www.pmr-gca-northeast.org.uk -PLEASE NOTE - Posts on this forum should not replace your relationship with your medical advisors, nor the advice you receive from them. Views expressed are not necessarily of PMR & GCA NE SUPPORT
 
 FAQFAQ   SearchSearch   MemberlistMemberlist   UsergroupsUsergroups   Join! (free) Join! (free)
 ProfileProfile   Log in to check your private messagesLog in to check your private messages   Log inLog in 

After 3 ½ years free from pred - now 7 ½ years in remission

 
Post new topic   Reply to topic    pmrandgca.myfunforum.org Forum Index -> CLUB ZERO ..... POSTS FROM MEMBERS ONLY
View previous topic :: View next topic  
Author Message
Please Register and Login to this forum to stop seeing this advertising.






Posted:     Post subject:

Back to top
Ragnar Sweden



Joined: 08 Jun 2016
Posts: 21
Location: Sweden

PostPosted: Wed Jun 08, 2016 8:55 pm    Post subject: After 3 ½ years free from pred - now 7 ½ years in remission  Reply with quote

Mrs K asked me to post a shorter version of "my story". I was told I put it under the wrong title so here it comes again

After a week´s trip to Athens the first week in April 2005, I felt very strange and had a dry cough. After some weeks with blood works and a biopsy in a temple I was told I had pmr but they didn´t tell me I also had GCA, so I heard about that later.

I was put on 20 mg Prednisone (which is far too low for GCA) and I didn´t get very much information about pmr. Just that it would probably take ½ - 1 year to be free from pmr. I was also told I was lucky to have a disease that would pass in a short time. The next day I flew to the USA to participate in a class reunion after 50 years from graduation as an exchange student in a small town in Minnesota. My wife covered my white bandaid in the temple with skin-coloured surgical tape, so it shouldn´t show so much, especially not on the class picture. After about a week, while travelling in California by rented car, my wife used the scissors of a Swiss army knife to cut the strings that they had sewn at the biopsy. She dipped the scissors in gin from a miniature bottle we had got on the Atlantic flight – to sterilize it. Due to the cortisone, I felt great and on the national day of the USA, 4th of July, we walked downtown without problems. The brochure said the motel was in midtown, near downtown. I think we had to walk 20 blocks and then back – but I felt great (due to the pred) even if my wife got tired despite being in better condition than I.

I reduced the Pred by 2.5 mg every 3-4 weeks until I reached 10 mg. Then I reduced by 1 mg every month until I reached 5 mg. I tried to reduce below 5 mg during a whole year, but every time I had to go back to 5 mg due to fatigue. I thought it was no idea to go around being tired all the time when I didn´t have to. Unlike most persons with pmr, I had fairly little pain. When I had slight pain, it could be anywhere in legs or arms. After a year, I thought I would test a new regime. I took the lower dose 1 day, the old dose 2 days and repeated this once more. After about a week I took the step and lowered the dose each day. By doing this, my body reacted positively and I could start going down below 5 mg but only about 0.5 mg at a time. I had 2.5 mg tablets and cut them by hand in four parts, so it really was 0.6 mg at a time. If there was a problem, I just continued 1 day low dose, 2 days old dose for another week or so.

After 3 ½ years – in the middle of December 2008 – I got down to 0 and I haven´t had any problems after that. My belief is that it is better to feel well and take the disadvantages a bit longer, especially when reaching doses of 5 mg and under. I am of course grateful that I haven´t been in pain so badly as most of fellow pmr-sufferers have. To encourage those who are fighting I proposed to start Club Zero some years ago and we now have many members.


_________________
Ragnar

Free from pred since December 2008. OK so far. Member of Club Zero
Back to top
View user's profile Send private message AIM Address
Display posts from previous:   
Post new topic   Reply to topic    pmrandgca.myfunforum.org Forum Index -> CLUB ZERO ..... POSTS FROM MEMBERS ONLY All times are GMT
Page 1 of 1

 
Jump to:  
You cannot post new topics in this forum
You cannot reply to topics in this forum
You cannot edit your posts in this forum
You cannot delete your posts in this forum
You cannot vote in polls in this forum

Card File  Gallery  Forum Archive
Powered by phpBB © 2001, 2005 phpBB Group
Create your own free forum | Buy a domain to use with your forum