june clinic visit

mig

Had a letter this morning about my last visit(i always get a copy of letter that is sent to gp)Bloods are within normal range,numerous joints sore and swollen and sub-luxing,it seemsthat dmards are just not working for her so the next step is for her to go onto anti tnfs,consultant is not willing to do this till have had liver scan,everyone is says its the meds that have given the abnormal bloods.So i am to stay on low dose pred till the scan has been done then come off them slowly and see what happens,my last das score was 4.8.My fingers and toes are really distorted ,it seems to be happening fairly quickly.Do people go on tnfs without reaching the required score? Mig

dreamdaisy

I don't think you can gain access to the meds until you have failed on one or more DMARDs but the thinking is changing: they can be granted within six months (it was two years in my early days!) but I think the DAS score has to support your 'claim' for them. It could be down to the discretion of your consultant however, and you never know he/she may decide it's time for you. I wish you well and good luck for the appointment. DD

stickywicket

Sorry, mig, I can't help at all but, whatever does or doesn't happen, I hope it's good.

barbara12

Hu Mig
Sorry I cant help, but I do wish you well with the treatment...when you get it that is....you take care xx

duvarayi

Hi Mig

Sorry I also have no knowledge of this. I just to wish you the best about your treatment.

Sending you (((()))) and hope all works well.

earthspirit

my das score is 9 and i cant get tnfs till i have had two dmards - same rule for everybody

does my 3 wks on sulfasalazine count as one failure?
how long would i have to take meth before that was a failure?

keep in mind the rhuematologist told that me dmards arent going to work anyway as i had disease too long and too severe.

im quick to knock meds but do have to say that sulf was reducing the swelling within 3 days of taking one tablet a day. just a big shame they put me flat on my back sick.

stickywicket

earthspirit wrote:

the rhuematologist told that me dmards arent going to work anyway as i had disease too long and too severe.

Earthspirit, I'd had RA for 40 plus years when I went on to methotrexate and it has worked well for me for over 10 years. By the time I went on it I'd had 2 TKRs for 20 years and, in my early years of it, I only had 1. aspirin 2. pred and 3 anti-inflammatories.

DMARDS do work very well for a lot of people.

mig

Thanks for your reply Sticky,i have had meth both tablet and injection ,we tried lef for 6 months that too affected my liver ,then we tried hydroxy that did nothing for me we tried lef again and liver played up again,now i am waiting a liver scan,so its dullers, naproxen and pred till scan is done.Then we see what happens when i come off the pred.Mig

salamander

earthspirit wrote:

my das score is 9 and i cant get tnfs till i have had two dmards - same rule for everybody

does my 3 wks on sulfasalazine count as one failure?
how long would i have to take meth before that was a failure?

keep in mind the rhuematologist told that me dmards arent going to work anyway as i had disease too long and too severe.

im quick to knock meds but do have to say that sulf was reducing the swelling within 3 days of taking one tablet a day. just a big shame they put me flat on my back sick.

Perhaps I misunderstood but I thought you'd refused to take any more meds Earth Spirit?

Mig,don't forget part of the DAS score is your own assessment of your condition - bear that in mind when you next have it done.

dreamdaisy

I had months on tablet meth (without any palpable response via the bloods let alone anything else), about two months on leflunomide (that gave me cracking headaches which resulted in an entire Easter holiday spent in bed in darkness thanks to a black-out blind but my head still bleeding hurt), about a year on cyclosporin during which time I grew hair on my chest, upper legs and the backs of my hands (being a natural blonde helped but if you saw me in the wrong shaft of sunlight? :shock: ) and then I was granted my first shot on an anti TNF. One of the problems we face is we know that these meds are powerful and can cause trouble to the rest of the body but we also know that if we can battle through them the body can adjust and the med may work. It has to be one of the lousiest tightropes known to humankind. There are no easy answers my lovely but I hope you find the one for you. DD

7worlds

Hey Mig. Hope you get it sorted out soon. It can be an awful waiting game trying to get the right treatment. Am i right in thinking that tnfs are like the holy grail of treatment? I am probably going to come to the end with my second dmard due to problems.Dont know what the benchmark is for tnfs in n.ireland. Have a feeling it wouldnt be easy to get.


7worlds

mig

Just to add next clinic visit is the middle of august so hopefully I should have had the scan by then.Mig

Folara

Heya mig

I can't help much I'm afraid other than to send you a big hug and a spoon from the drawer to help keep you strong whilst everything is getting sorted.

Fols x