lots of pain, no meds

poorlypaws

Diagnosed last July with RA, initially given methotrexate, hydroxychloroquin and folic acid hydro was stopped due to retinal problems, kept going with methotrexate but had nausea, hair loss, runny tum, depression, skin rashes, so consultant suggested injections. Hosp is a 60 mile round trip soi asked if my practice nurse could show me how to self administer, Hosp wrote to go, went in for appt, nurse said don't really know what Hosp want, letter from Hosp said I had refused treatment!!!! Gp said speak to Hosp, now no meds since Feb and big flare at moment, lots of pain and can't get an appt with gp, sorry such a long post but at wits end here, staying up doing this rather than the world of pain going to bed

stickywicket

Hello. I apologise for what will be a brief reply but it's past my bedtime You should not have been left without meds but I'm a bit unsure who said / wanted what. As your GP said, you need to contact your Rheumatology Helpline at the hospital to get this sorted asap. Don't wait for others to sort it out as it sounds as if it might take some time. Just ring them. Good luck

dreamdaisy

If we don't push we sometimes get forgotten and this would appear to the be case with you. I had to go to my hospital weekly for my meth injections but then they changed the system so mine is delivered and I self-inject.

I was begun with sulphasalazine then meth tablets were added. I got a rash from them so I was switched to leflunomide, then cyclosporine. I am surprised that they haven't tried other tablets but to leave you high-and-dry like this seems like a classic NHS SNAFU. :roll: If I have a problem I contact my rheumatology unit because my GP does not prescribe the meth, so get in touch with yours, explain the situation and I hope something can be sorted for you very soon because this cannot carry on, you need your disease brought under control. I wish you well. DD

bubbadog

I agree you shouldn't have been left without any pain meds and I agree you should get back on to your G.P and ask them to find something that will help you as you can't carry on like this as the wise DD said.

stickywicket

Just to emphasise – DD said to get in touch with your rheumatology unit, not your GP. They are the ones who deal with meth. Trying to make an appointment with your GP will only delay matters except for pain relief.

barbara12

Hello and welcome to the forum
What a rotten position to be in,like the others have said you get on to your rheumy and make yourself heard don't get off the phone till they promise to get things moving for you..please let us know how you get on..

poorlypaws

Thank you folks, I was in agony last night and was on the net looking for......well I don't know what really but help and sympathy are probably right up there! Strange but it definitely helps to know others understand so thank you. Only looked at this when I got home from work tonight, having tried without success to get a gp appt. Will call the rheumy nurse tomorrow and try and sort things out meanwhile have had some anti inflammatories which mean I can at least function and move albeit with pain. Thanks again will update when I have spoken to rheumy.

barbara12

like you say talking to people that understand is a very big help, a sought of release..good luck getting an appointment with your rheumy

bubbadog

stickywicket wrote:

Just to emphasise – DD said to get in touch with your rheumatology unit, not your GP. They are the ones who deal with meth. Trying to make an appointment with your GP will only delay matters except for pain relief.

Sorry! My mistake, was muti-tasking while reading the posts!!

poorlypaws

Thanks again folks, the Hosp had discharged me from their care when they said I had refused treatment, which I didn't! I only know this cos finally got in to see gp today and he told me! He has referred me to the Hosp again and given me anti inflammatories and pain killers for now, he was clear that I needed to be on some form of dmard to stop the joint damage and the sooner the better so has requested the referral is fast tracked. He said that the meds he has given me are intended short term relief only as my rf last July was 383 my rheumatoid is pretty aggressive and needs urgent treatment. I am sitting here tonight in some discomfort but lots more bearable so here's hoping for a swft appt.

stickywicket

Your GP is right. You need DMARDS and only the hospital can prescribe them. I hope your appointment comes through soon

poorlypaws

Hello folks, well finally got a hosp appt for 4th December! In the meantime my ra seems to be moving changing all the time, started with my hands then shoulders now back,, knees and heels sometimes ankles and hips although one of my hips is an artificial joint so just discomfort rather than pain. Trying to identify any triggers but other than the obvious like not staying in one position too long and doing too much cos I think I am OK one day only to pay in spades the next! Am interested to see if there are any diet changes that may help so will check elsewhere on the forum.

stickywicket

Try some of Arthritis Care's publications on Healthy Living http://www.arthritiscare.org.uk/PublicationsandResources/Selfmanagement/Healthylifestyle

You might also find their thread on RA Unspoken, higher up the page, to the useful.

poorlypaws

So finally saw consultant,bloods came back showing very high disease activity, had a steroid depot shot, due to start back on method next week, injection this time to see if it helps with side effects. If I still get bad side effects the consultant said I would qualify for biologic treatment. Not only that but she copied me in to my blood results letter and the letter she wrote to my gp to minimise any misunderstandings! Feel relieved in a way at least I am back in the system :hoho:

dreamdaisy

It's good news that you're back in the system, I hope the depo helps but it can take a while before any benefit is felt. I am on injected meth (it's a doddle) but I was refused the biologics until I'd failed on three DMARDs. That took years so maybe some clinics are more enlightened in their thinking! I hope you feel 'better' soon. DD

stickywicket

Good. I hope the jab works but the main thing is that you are officially back in the system so future potential problems can be sorted much more easily. Well done :xmas_lol: