Tendon trouble.

Hello to everyone on this wonderful informative forum. I have been reading the wealth of information you post. It's so good to know that all the crazy symptoms and side effects have been experienced by others. Don't feel so alone now.

My main reason for joining is to find out if anyone has had ruptures of flexor and extensor and had the repairs done surgically. I have had 3 repairs on each hand done in the last 4years.

I was diagnosed with RD in 2001 but no problem from it until it decided to really play up in 2009. I have not been able to work since.

Currently on mtx 20mg weekly 5mg folic acid for 6 days. Tramadol and paracetamol and thyroxin 175mcgms for the under active thyroid I have had for 25 years.

Mtx is the only med I can tolerate,all others I have had quite severe reactions to. Have also had 1 of the 2 infusions of rituximab. Second one canceled as became quite ill after first one. Same thing with Humira .

Rheumy would like me to now try tocillizumab. I am a little nervous as don't want to feel as Ill as on others. But also would like to find some medication that can control the RD .

Apologies for such a long first post. Really hoping someone will have some experience.

[nomoreheels]

Hiya HKayA. Welcome! No you're not alone, though without this site I know it can feel like that if you don't know anyone else with RD. I hope you find it helpful & sure you'll be sharing experience as, it sounds as though you have a bit to share!

I haven't had problems with my arms though do have poor grip in spite of my inflammation being controlled. I tore my Acchiles tendon but that's no help to you either! Basically I'm of no use except to say it's refreshing to hear of someone tolerating MTX but not most other meds, not that that's helpful for you biologic wise but at least you have it in your armoury to work with your next one which with a bit of good fortune you'll not react negatively to. We have a member on here who's just started on tocilizumab so maybe if he sees this post you'll be able to swap experiences. He's not been too good recently so been laying low but has been popping on now & then lately so must be feeling a bit more himself.

I hope there's someone comes along who can relate to your post & help you.

[Hidden in reply to nomoreheels]

Thank you no more heels. I appreciate your welcome and reply. Wasn't sure if anyone else had my kind of RD. It seems to like shredding my tendons rather than wrecking the joints!.

I'll have to wait and see if anyone reply with tocillizumab advice and experience.

[allanah]

Actually if you call the nras office our founder Ailsa has joint and I think tendon problems with her RA! Hoping I'm right but even so they will know of people who have similar problems and drugs to you and are able to support and advise you.

Welcome to the site, I found it really helpful and the people lovely here, so sending gentle hugs xA

[Hidden in reply to allanah]

Thank you for your reply and advice. Apologies for late response.

[Jeanabelle60]

Hello Kay, good to hear from you. Glad too that you are finding the site so helpful. It can be a real life line at time. I was diagnosed nearly 4 years ago and it has been a very eventful journey I can tell you.......but not all bad I might ADD.

I have been on ALL of the Bio's that are available to me. I'm sero negative and can't tolerate MTX. That limits what can be done for me. I found the Bio's that I have been on have worked very well for a short time, didn't work at all or caused severe reactions. The last one, Abatacept, was for a wonder drug. I have had 18 months of what I would call remission until about October there past. By December I knew it wasn't working any more. When I was put on Abatacept at the beginning I was told it was the last drug available that my body would tolerate. I'm seeing my lovely Dr Armstrong, my Rheumatologist, on Wednesday so I'll know more then.

On this site you will have learned that there just aren't two patients the same, literally! Recently I learned to my horror that the effectiveness of drugs can diminish after a period of time. Some are very lucky and find a drug regime that works very well from the beginning and continue to work many years after........as I said, there are no two the same.

I hope you get answers to your questions but I'm sure you will get load of help and advice on here. All the very best. Jean

[Jean--]

Enbrel is very helpful nothing else worked for me

[Hidden]

Thank you for your reply and apologies for my slowness.