Why is it we are not listened to

[Matilda_1922]

I see many threads saying they have pain but are often dismissed by their health professionals.

I currently on the titrate trial since April. I feel I'm no further forward than I was in March. I feel it was suggested I try this trial because they didn't know what to do with me. My DAS score in March 4.5 and was 3 DMARDS. Now DAS is between 3.9 and 5. It drops following Steroid injection. Two have been stopped and now on 2 MXT and lefluomide and experiencung their side effects. Changed from MXT tablets to injections 5 months after diagnosis due to its side effects but I still get these side effects.

I have had 3 lots of depo steroid injections and 1 bolus into a joint. I'm told these injections last approximately 3 months but for me they last about 8 weeks. I'm also told I can only have 500mg in a year I've had 390 mg so far this year from the end of January.

I am fully aware the NHS is straining at the seams. I had several appointments cancelled in my first year of diagnosis in 2016 although I was to follow the early inflammatory pathway which was not followed. I saw 3 different specialist nurses on 3 occasions and 1 telephone consultation call which I found unfruitful. Didn't see the consultant for 15 months.

I'm struggling at work I am working part time having reduced my hours a 5 months after diagnosis which will affect my work pension at 65.

At Christmas I noticed my vision was blurred when watching TV with subtitles as I was on Hydroxychloroquine I saw the opticians who referred me on and eventually was seen by an eye specialist who said I had some scarring due to dry eyes and suggested eye drops and discharged me. By this time I had stopped the Hydroxychloroquine due to migraines I had and said Hydroxychloroquine can cause migraine. I haven't had any more migraines.

A few weeks ago I noticed my MXT was taken off my repeat prescription I normally request on line. So saw the GP who told me due to my local CCG I need to come to the surgery to request it. As I work part-time this is not a problem but if I was it would be.

I feel really down today so I just needed to get this off my chest. As pain in in wrists and hands has been quite bad recently.

Thank you for listening

Matilda

[Hidden]

Hello Matilda, I found your post interesting. It's such a shame that you have had to put up with the effects of an ailing NHS. I like to think of the NHS as having several Autoimmune diseases....It's all swollen and sore, can't do a proper days work and really needs tons of medicine thrown at it at the start of each week!

I hope your situation improves soon and that you feel a little better for having posted.

Cheerio from Susie.

[Matilda_1922 in reply to Hidden]

Thank you Susie

I really hope so x