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Date: 02.07.2013
From: lol

Subject: inflammatory arthirtis

i am 62 and have had arthritis for years also temprol arthritis i was put on steroids 3yrs ago when i nearly lost my sight. i am down to 2.5 and have been told i can never stop them. about 6mths ago i started having really chronic pain in my hands wrists and feet. when i went back to my rumey consultant she done a blood test, and i was told i had inflammatory really high levels showed in my blood test. she said i would have to go on sulfasalazine as it was the only thing that would work to stop it. i am not going on it as there is noway i will chance getting the terrible side effects i am not good at taking tablets. i am also having steroid injections for the pain which work but she told me i cant have anymore for at least 5mths because of side effects and have just had a really bad flare up and could not move my hand it felt as if it was broken. phoned my nurse and she said you can get a flare up when you have had your steroid injection i had my last one last week they said if i didn't go on the sulfasalzine my bones would become deformed i am so worried. anyone who did not take sulfasalzine and is coping with it. i would be really glad to hear i need to be reasured x
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Date: 02.07.2013
From: SteveD

Subject: Re: inflammatory arthirtis

Hi
I am sorry to hear that you are having such a terrible time with it. I know when my hands flare up, it feels like someone is bashing them with a hammer.
I can understand your worry about struggling with side effects of tablets. However I think everyone gets on with sulfasalazine differently and so the responses on here will vary from good to bad, depending on who you talk to.
Could I suggest, talking to your rheumatologist and maybe having a trial of sulfasalazine. Perhaps starting on a really low dose and very slowly and cautiously increasing the dose. Obviously if you experience side effects which you cant tolerate, then you can promptly stop taking them.
I don't know if that helps, but its probably what I would do. I really hope things settle down for you.
Best wishes
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Date: 03.07.2013
From: Colin W

Subject: Re: inflammatory arthirtis

Hi , I have been on sulfasalzine since 1996 & dont get any side effects from it , most people dont , there is other drugs they can try if you dont get on with sulfasalzine but it is one of the easiest to get on with

they treat crohn's disease at 4x the dose they give us with Rheumatiod Arthritis & other arthritis so dont worry & dont expect you have any problem with the drug
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Date: 03.07.2013
From: Eve

Subject: Re: inflammatory arthirtis

Hi, I have rhumatoid arthritis and was initially put on sulfazalazine and couldn't tolerate it although many people are fine on it. Probably medical reason for me as I can't tolerate "sulfa" drugs.

I then went on hydroxychloroquine but was taken off that due to vision issues (which turned out to be the arthritis rather than the drugs!) and am now on methotrexate, initially tablets and now injections. There are side effects but they are settling down and I can feel the benefit.

Is there a reason they have only offered sulfasalazine? Maybe medical reasons (eg vision issues and hydroxychloroquine) or interaction with other medication?

Mathotrexate comes in self injectable form (if you don't like tablets, they are so easy to do, just pop it in your tummy once a week) and they can start you off on a low dose and build it up.

Can you book in to have a good chat with your nurse about the options, what is and isn't suitable and why etc... and get their advice on taking the drugs (as they will have come across lots of patients on it).

None of the drugs are particularly nice but it's a long run thing, trying to prevent damage being caused (also from it occuring in other areas) and help with your pain. Everyone reacts differently to different drugs so it's a bit of a balancing act.

Depending on any side effects, there may be additional ways of helping them. I take other drugs to help me with my side effects and, for me, this far outweighs not taking them and suffering the consequences.

I hope you get it sorted and get some relief soon.
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Date: 03.07.2013
From: Paula-R

Subject: Re: inflammatory arthirtis

I was on sulfasalazine(SLZ) for four and a half years. I started taking 4 a day, this was then raised to 6. For the last two and a half years of taking it I was also taking methotrexate.

Looking back now since being of the drug the only side effect that I would say that I had was sleep disruption. Since being off the drug I am now sleeping better. I came off the drug because my RA had become severe and I am now on Enbrel and methotrexate and I am now due to Enbrel in clinical remission.

I was once told that there is no side effect worse than RA running riot in your body.

When I first was diagnosed with RA I phoned the NRAS helpline and one of their volunteers who had taken SLZ phoned me. Their helpline number is 0800 298 7650 perhaps you may like to phone them.

Paula
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Date: 08.07.2013
From: lol

Subject: Re: inflammatory arthirtis

hi sorry to go on about this rummy nurse phoned me today as i had to cancel my app had a bad flare up over the weekend in my foot couldn't walk pain was terrible she wants to see me on fri said i need to go on sulfasalazine don't know what to do. does anyone know if you get any of the bad side effects and it does any damage to your liver hebtitis can it be reversed or are you left with liver damage etc anyone had bad side effects ? would be grateful of any feed back need to make my mind up for fri thanks
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Date: 08.07.2013
From: rhona

Subject: Re: inflammatory arthirtis

Hi Lol, I have been on sulphasalazine for 12 years or more and I have had no problems with them. You get blood checks while you are on them and they would show any liver problems etc up before any serious damage would be done. If they didn't agree with you then you can stop them. I would be more worried about the damage the arthritis would do to your joints if you don't take something.
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Date: 08.07.2013
From: lol

Subject: Re: inflammatory arthirtis

Hi rhona thanks for that i am really frightened to go on it as my husband is recovering from leaukima and i cant afford to be ill also frightened of side effects if you get hep b do you have it for life also the liver damage can the side effects stop or do they cause damage i am in so much pain in my foot at the moment cant walk. they have told me i cant have any more steroid injections. i am already on steroid by mouth have had arthritis for years this inflammatory has just flared up last few mths. what did you do for the pain before you went on suplahasalazine what is your pain like now have to make my mind up by fri
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Date: 08.07.2013
From: rhona

Subject: Re: inflammatory arthirtis

Hi Lol, If you were unlucky enough to get liver damage then it should be reversible when you stop the drug. I take a cocktail of drugs now. I started on sulphasalazine then they added methotrexate then hydroxychloroquine and now a biologic drug called rituximab. I was really worried before I started the rituximab as they say it can cause a rare brain disease but I was in so much pain at the time that I would have taken anything. This time last year I was in agony and could hardly walk. I still have a bit pain and my foot is hurting just now but nothing like it was. Steroids can cause a lot of side effects too and to be honest I would rather take sulphasalazine than steroids. Before I went onto sulphasalazine I was taking ibruprofen but they can cause serious stomach problems. I honestly don't think sulphasalazine is too bad. It is also prescribed to people and children with crohne's disease (spelling doesn't look right) Remember all drugs have side effects and it is sometimes better not dwelling too much on them. x
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