Delay starting meds.: Well, i was supposed to start... - NRAS

NRAS
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Delay starting meds.

Well, i was supposed to start sulfasalazine on 20th september, but beacause the rheumy nurse was off sick it has been postponed to 21st october. I am feeling low because the pain is getting progressively worse. On tuesday, after a day at work, i didnt have the energy to wash up after tea, and had to lie down for half an hour before i could do it. I am unable to change the bedding, and have to wait for my fiance to come to see me (he lives 90 miles away and cannot drive) before the bed can be changed. Getting dressed can take upwards of half an hour which then makes me late for work. I saw the physio yesterday, and he was very concerned about my pain levels and is going to talk to my gp to see if things can be speeded up. In total it will be 13 weeks from diagnosis to starting on meds. I live on my own, and i think the rheumy team do not realise just how difficult i am finding day to day life, and how low my mood is becoming. Whilst i realise the meds are not a miracle cure, and sulfasalazine may not work for me, the sooner i start, the sooner i will find out. Thanks for listening/reading.

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Very sorry you are feeling so low atvthe moment. I was in the same position as you . leave everything and look after yourself. I hope you get things sorted soon. Have you contacted rheumatology directly to explain how bad you are ?

Trish

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When appointment was cancelled i rang and told them i am in a lot of pain. I have a telephone appointment with a rheumy nurse on monday, we'll see how that goes. Thanks for your reply trish.

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No problem. Dont let them put you off any longer. You need help now.

Good Luck

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Has a steroid injection been suggested to help you through this patch?

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I had a steroid injection in my right shoulder, but that hasnt helped the pain elsewhere in my joints.

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Ask the Rheumy nurse if you can have a Depomedrone injection......it's given in your bottom/thigh & calms down all your joints as a temporary measure.

I really feel for you....when first diagnosed, just like you I could not change the bed & sometimes couldn't even get dressed for days. Now I think so what .....so do try not to worry about that.

Can you take a few days off work & just try to rest with painkillers until you get the Sulphasalazine?

I hope the rheumy nurse sorts things on Monday.

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I think you should talk to your GP and rheumy team about how to help you over the next couple of months. Even if you start the drugs in a couple of weeks it will still be several more months before they start to work. Have you at least been prescribed some stronger anti-inflammatories & a stomach protector? Personally I hate oral steroids as they make me loopy, but like the injectable type. A shot in your shoulder will be a smaller dose in a specific place, the general injections in your bum are often a bigger dose.

Sadly, unless you push you are unlikely to get attention.

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I am on naproxen, lanzoprazole and co codamol. Sadly i had to go to out of hours gp last night as my diverticulitis flared up. Gp said ive to stop naproxen for at least the next week. I think the stress of the ra has triggered diverticulitis. I will ask about steroids. Thanks.

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I was diagnosed with this dreaded disease 4 months ago. I am on Methotrxate and it is working, but it took 5 weeks before I saw great improvement. In the beginning when I first started this med I would have flare ups where I couldn't work cause I couldn't dress myself. My Dr prescribed prednisilone and that stuff worked beautifully. It was only a weeks worth but that's all I needed at the time. A couple of weeks later, another flare up and prednisilone again. Then the Methotrxate finally took hold and I have been fine ever since. So maybe they can get you the prednilisone pack. It's great but not something you would take all the time, just for the short term. Good luck, I hope you can get some relief.

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Im gonna ask doc for some of that, and try to get an earlier appointment than 10 oct. Many thanks mickeysmum. 😊

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I too am on MTX and prednisolone and 6 weeks in feeling so much better πŸ‘πŸ» I take 8 tabs once a week MTX and 10 mg prednisolone once daily plus Hydroxychloroquine 200 mg twice a day - fingers crossed its working πŸ™πŸ» I can actually ru. Up and down stairs where as befor it was one step at a time with pain ☹️ And just to sit down and get up was agony 😑 But now in a week or two I am going to have my steroid dropped to 7.5 then a month later down to 5mg πŸ˜ƒ So hopefully this RA is getting under control πŸ˜ƒπŸ˜ƒπŸ˜ƒ

Get on Meds as soon as you can lovely - and each day try and stay positive and with each tablet I take will help in your recovery even though the side effects can sometimes be unpleasant X

Wishing you well ❀️❀️

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They should give you a steroid injection or oral steroids as the meds can take a couple of months to kick in. I'm on sulfalazine and it luckily works great for me. Only diagnosed in march so long road but touch wood it's working for now. Go to your Gp and ask for oral steroids to tide you over. If you are in so much debilitating pain they should give you them. I can sympathise as I've been there what with meds not being prescribed when you need them and it's so frustrating !!!!

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Thanks kb. In definitely gonna see gp for oral steroids. But do they affect digestive tract? And why arent they recommended by the health care proffesionals?

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Oral steroids have all sorts of side effects so they will give them for the shortest time possible. Not sure re digestive tract you'll have to discuss with your gp which is the best way ahead for you. all meds have side effects and if I could live with the pain I'd be on no meds at all. My rheumy team offered the injection but because I'm a whimp I asked for oral steroids. It depends on how clued up your Gp is on Ra because my meds were held because I had a abnormal blood result due to the naproxen use. I do hope you get all of this resolved soon because it's not easy to live with but once you find something that works for you life is sort of ok x

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Totally agree with the posts above, you need to insist your Rheumatology team give you what you need. Mine issues a flare-up protocol to my gp if I get a bad one and then my practice nurse gives me a depo medrone jab in my thigh. It's uncomfortable but so worth it as it works right away for me! This should tide you over until the sulphasalazine kicks in.

Just gone onto methotrexate after 5 years though, and that's working okay so far! Good luck! Ally.

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