Writing out of desperation to try and find help for my husband. He has been struggling with constant pain in his feet for over a year which has been getting steadily worse. The pain and stiffness has spread to his ankles and is now spreading to his hips and lower back. He was originally treated for gout which proved ineffective (for around 9 months!). They have at last concluded that this is not his problem and have said, in a pretty vague way, that it may be arthritis.
In this same way as his possible gout was treated, they are now going to treat for arthritis, without being sure what it is, and he is going to be prescribed the drug sulphasalazine. I'm sure many of you are aware of the unpleasant, potentially life-changing side-effects of this treatment. I am very concerned that he would be starting something that will make his life so difficult when they don't even know what it is.
I want to try to help him get the treatment he needs but I don't know whether he is being treated fairly.
I suspect that the hospital is being rather slow, and as the weeks go by he is in progressively more pain.
I no longer know what I can do to help, as he gets more and more negative and depressed. Does anyone have any suggestions?
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RuthMC1
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Hi, I really think you need to get your Dr to get him an appointment ASAP with a rheumatologist and get a diagnosis. I also started with it in my feet and it was awful, I was given methotrexate and that didn't suit me. I then stayed off any meds for a few months and it got worse and worse, luckily I got an appointment with the nurse and started sulfasalazine. Although I've only been on it for 2/3 months it's definitely started working with me, I'm walking the dog with the Mrs and kids, not waking up with terrible pain all the time and generally feel loads better, long may it continue. I realise yours and his reluctance to start the meds, I was the same, until I got this at 44, I'd never taken anything or been ill ever but I don't think anyone wants to take anything, sometimes we have to make the right decision for us. As for the side effects of this drug, I think you will find this is one of the perhaps more mild drugs to start on and I personally haven't had any side effects whatsoever and you will find lots of people on here who would agree with me.
Hope you get the appointment and he gets some relief soon. Take care.
Thanks for your reply- nice to hear someone who hasn't found the sulfasalazine so bad. This vague diagnosis was from the rheumatologist, which is disconcerting.
I think the diagnosis needs to be clarified then you can start thinking about the treatments. It is a scary time and to be honest I went through a period of simply not believing I had it!! Once I did I got it in my head that I would do what I could to be has healthy as I could and the earlier you can start treatment then you can really slow down the progression of the illness. Hope he gets clarification soon.
Thank you for posting and for clarifying that your husband has seen the rheumatologist. Please don't be alarmed by the lack of a firm diagnosis, as this is often the case. Conditions such as rheumatoid arthritis (RA) and other forms of inflammatory arthritis are not easy to diagnose, as there is no single, definitive test for them, so diagnosis is made through a combination of blood tests, scans, examination of joints and discussion of symptoms. It is not uncommon to not get a form diagnosis at first, though with time they may be a little more certain. Unfortunately we also speak to a lot of people who were initially given a different diagnosis, as in the case of your husband.
Even when a diagnosis isn't certain, a rheumatologist will often prescribe a disease modifying drug (DMARD) like sulfasalazine (one of the most commonly prescribed). This is because a) the diagnosis may never be certain, b) it is often a greater risk to be cautious and not treat the condition and for it to then turn out to be RA than to treat it as RA when it might not be and c) sometimes treating it as if it is RA and seeing if this helps can aid with getting a firmer diagnosis.
A lot of these drugs can seem quite scary on paper, but the more severe side effects will always be the rarer ones and the majority of people will get no or minor side effects. Also, the more minor side effects often improve as the body gets used to the drug. If he does have RA, he may well find that after being on the drugs for a few weeks, his symptoms will improve and he may feel a lot better than he does at the moment, while the disease is not being controlled.
I hope this helps, but if you or your husband wanted to talk his situation through in more detail you are welcome to call our helpline, which is available Mon-Fri, 9.30-4.30 on 0800 298 7650.
I second what has been said already but would also suggest addressing your husband's mood. Low mood can be associated with chronic illness either as a part of the illness itself or as a result of it - understandably so.
If your husband is persistently low it would be worth chatting to the GP about this for a couple of reasons. It may be an other part of the diagnostic puzzle. The GP may feel that an anti-depressant is warranted and this could have a number of beneficial effects - as well as improving mood. Depression often intensifies the experience of pain and, goodness knows, there's plenty of pain in inflammatory diseases to begin with. Some anti-depressants also enhance the effects of pain killers and are given in low doses for just that effect. Additionally, both low mood & pain interfere with sleep and I'm sure everyone here would back me up in saying that sleep, or the lack of it, can make a huge difference in how you cope.
So sorry you are both going through this just now. It can be a lengthy process and frustrating. Once they find the right treatment, things will start to get better.
I get so cross when specialists don't explain clearly and leave people confused, worried and anxious. It wouldn't have taken long to tell you that they were sure it was one of the inflammatory diseases, but not yet clear which one - just as Victoria set out in her reply to you!
Anyway, there are a lot of people on here who take sulphasalazine, myself included. I've taken it for years with no problems. It took a couple of months to get used to it, so had a lively digestion for a while, and the Orange pee is a bit startling at first - but it's really been fine and is effective for me. So do try not to worry too much, and if he doesn't get on with it he can always stop taking it.
This is really the worst time. I was at my lowest in the period around getting diagnosed when the pain was at its worst and I was so worried about what the future could hold for me. But a few months later once the treatment had started to work (they all take a few months to make a difference) things did improve and have carried on doing so. I agree with the others that it would be worth speaking to your GP about depression, and pain control too.
Thanks everybody for your help. I have spoken with the rheumatology dept at the hospital who gave me a more detailed explanation of their choice of treatment. Like Victoria and helixhelix say, they would be using this treatment regardless of diagnosis as they seem fairly sure that it falls into some bracket of arthritis (but not necessarily which) rather than as my husband had thought that they had no idea what they were treating at all. I talked to my husband and found out a bit more about the things that were on his mind, answered some of his questions and I think he feels a bit better.
Fundamentally it was encouraging to hear that sulfasalazine isn't always the nightmare it's full gamut of side-effects suggests! Also I'm glad that the way the hospital/consultants have been behaving is a standard thing. I was worried that they were screwing us around (aside from having treated an obviously absent problem for 6 months, but that's a whole other story!).
It's really good to hear that we were all able to help and that you and your husband are feeling a bit better about the situation now. I'm glad you found our forum and hope that you will ask on here (or call our helpline) if you or your husband have any other questions or concerns.
Hello, I am sure your husband appreciates this! I would say to get an appt. with a rheumatologist ASAP to get the correct diagnosis. I also wanted to let oyu know that the side effects of the meds needed to keep this awful disease under control are nothing compared to the agonizing pain that the disease leads to! I went untreated for 12 years until I was so emotionally dead that I wanted to die. It was not until I almost lost everything great in my life - my husband and my family - that I went for help. I will never look at another side effect for the drugs that make me feel so much better again! I am free of the physical and emotional prison that I was in before. I will also tell you that sulphasalazine is the lesser of the evil drugs and some people get effective relief from this and some do not. I will also warn you that this and all medications are trial and error. Patience is a must with his treatment if he does have auto immune arthritis. I am 2 years in and still have good days and bad days! Good luck and your husband is very lucky to have you on his side advocating for him. Which reminds me - YOU ARE YOUR OWN, AND HIS ADVOCATE IN THIS. Doctors will not do a thing unless you demand and research this for yourself. They do not know what is wrong until you tell them.
Thanks Dazzlebandit; I'll go with him to the next appointment and make a pain of myself with questions! I'm glad to hear you got through it. I will keep your words in mind.
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