Mrs UK where are you? Update too! | Arthritis Information

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Hello to all , Mrs UK I am wondering if you are okay? I have not received the drug info from you. Hope you are just having a well deserved holiday!

Now for 2010 update... 2005 I started on this PMR trip!!!


I have been off Pred for 2 weeks and getting more pain and stiffness every day!! My Rheumy wants me off Pred ... my Dr wants me to go back on Pred.. I am seeing Rheumy next week so I will hold out until then!

I have been having almost weekly blood tests this year and my ESR & CRP have been gradually going up! So I guess the MTX & Plaquenil are not holding the inflammation.
I also have hands pain and stiffness. I had not had this before. Also my knees and shins are very stiff and painful. My legs and ankles are very swollen even thou I am taking diuretics. Any one have this happening???
The small dose of Endep ( antidepressant) is still helping me heaps. I have not had any of the sweats that I was having every day, even thou it has been a hot summer here. I am also sleeping better, and I'm a person who needs her sleep!!
I have also had my 2nd infusion of Alcasta ( Zometa / Reclast) For new people this is a med for Osteoporosis, given once a year to people with a fracture and who cannot tolerate the other meds orally.
I was hoping 2010 was going to be 'the year' but not so far.
gentle hugs to all, Lyn

Hi Lynn,

Yes on top of the "normal" stiff and painfull areas I have pain in my hands knees and wrists. At the end of the day they stop hurting though.(and then the whole process starts again the next morning.
I started this trip 2001. From 2003-7 i was fine. Now back to the dungeon. After that back to this awfull desease that noone understands.Back on 4 mg pred.(I refuse to take more) The stiffness in the AM till about 1 pm is awful. 
They can fly to the moon but can't find a cure for autoimmune deseases.
I take 1/4 ambien to sleepHi there

There are over 800 'Orphan Diseases' registered and both PMR and GCA are on the list.

I have finally dropped to 5mg and holding - but I have GCA so expect to be on at least 1mg per day.


Hi Marianne, sorry you are "still" carrying PMR around!! I have been told of PMR being around on and off over many years ..

I am back on 5mg Pred and sooooo much better! My hands and knees are so much better too! In the AM its mainly my hands now that I have to work on to get moving. I am still having fluid retention even thou I take 2 lots of diuretics.

MY Dr is away so I will have to wait to get the results of my tests when I see my RD in about 4 weeks.

Have you had any other tests for RA for example?
Have you taken Plaquenil and Methotrexate?
Any long term pred side effects?

I take sleeping pills too. Have done for many years, another back disc problem!
I know what you mean about no one understands ect! Must admit thou I do hear of it more, the longer I have it. Usually some one will say they "have an illness that no one has ever heard of PMR.".Well, do we give it a bashing, so pleased to have someone know what we go through!

If they can fly to the moon ... they could have given this PMR a decent name, like ???

Just a suggestion.... I might do this too soon. 5mg / 4mg/ 5mg/ 4mg alternate days to see if the extra bit helps you more.
Hope you are a lot more comfortable,
Gentle Hugs, Lyn






Hi MrsUK, Hope you are managing okay on 5mg?
You have only started to have some quality of life with your achievements, of the supermarket isles ect.
Take care, gentle hugs, Lyn



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