Can anyone help with drug information please?

Does anyone know if Salazopyrin, (Sulphasalazine,) causes hair loss in men please? Does anyone know if you can take it with antibiotics, (my husband is on them permanently for a serious chest condition.) Has anyone managed to get the brand new drugs from America which have less side effects? They are know as Jakinabs. All information gratefully received as my husband resigned from his G.P.'s List, after being told the G.P. was "Too busy to discuss his diagnosis and treatment with him for a few months." My husband had been with the same G.P. for 20 years and was devastated to get a filthy disease like rheumatoid arthritis, then not even be able to talk to his G.P. about any possible treatment. Therefore, he hasn't had any treatment since his diagnosis in February this year, and cannot walk now.

28 Replies

  • I'm afraid I don't have any personal experience of sulfazalazine as it's not one I've been prescribed but you should find the answers to your questions in the patient information leaflet in the box. Others here take it so I'm sure they'll reply & help you.

    I'm afraid I've not heard of Jakinabs & searching for it doesn't come up with anything, no trial data, not even in the UK medical journals & I'm sure if it has been licenced for use in RD (the same as RA but replacing the A with a D for disease) in the US our professional journals would have some editorial about it. Could you provide any other information or alternate spellings? I'm normally pretty up to speed with things like that & I don't recall any of our US members mentioning of a similar name so a bit at a loss I'm afraid.

    What I am really concerned about is your husband releasing himself from his GP's care. I'm hoping that this has been a misunderstanding & his GP means that any treatment regarding his RD & not unable to see him as his Primary Carer? Your GP should still responsible for his general continued care & his Rheumatologist for anything RD related. Your h will of course also be under the care of his Rheumy as he's his Specialist Consultant (his Secondary Carer) of course but often it's shared care & the Rheumy is the initial prescriber of any meds necessary for his needs regarding disease & our GP signs off our repeat prescriptions for RD as well as any acute meds, the ones for whatever we would normally see our doctor about.

    So if I understand correctly your h has been diagnosed & seen a Rheumy but the SSZ isn't helping? I'm not sure if it's similar to other DMARDs but the one's I've had can take some while to start working, they're not the type of drugs you have immediate reaction to, they can take anything up to 12 weeks to work but I would think he was also prescribed something to help ease his pain & reduce his inflammation whilst the SSZ reached its potential? If not this is something that his GP could help with & why I'm concerned he's severed his ties with him/her. You don't say when he has a review with his Rheumy but we're not usually left for too long on our drugs at he start of treatment before we have bloods test or before we have a review so hopefully this will be the case with your h. Alternatively at his first diagnostic appointment he should have been given a telephone number should he need to contact his assigned Rheumy nurse, she should be able to help if he lets her know how he's struggling/unable to walk.

    I hope at least some of my reply helps, it does sound a most awful position to be in & trust it's been an awful misunderstanding so he can reinstate his relationship with his GP or register with another GP locally.

  • Hi nomoreheels & thanks for reply. My husband and I didn't like the Rheumatology Nurse from Hinchingbrooke Hospital, or the Rheumatologist, who appeared to be about 12 years old. He couldn't or wouldn't answer any of our questions about the medications he prescribed. The Nurse was a "jolly jolly" type who made out my husband should be pleased to know he had Rheumatoid arthritis and both he and I got an overwhelming urge to slap her, (which thankfully we controlled.) When I pointed out to the Consultant that my husband has a stomach ulcer and isn't likely to tolerate Salazopyrin, he was rude, being Asian. He said:- "So you wife has already decided you can't have that and you can't have Methotrexate like everyone else, because of your lung condition as it will destroy your remaining lung tissue, (my husband has bronchiectasis and only has a third of lung tissue which still works.) I took Salazopyrin years ago for ulcerative colitis and it was a truly horrid thing to take when you already have a damaged digestive system. I asked the Consultant, (since he was rude to my face,) how many Salazopyrin tablets he had ever actually taken. He gave my husband the usual cheap and cheerful Prednisolone, which will knock out all his immune system and leave him vulnerable to chest infection and possibly death, (my husband has survived 5 pneumonias.) My husband is 67 years old and I am very fond of him and will not let him kill himself with drugs too risky for him to take. All the G.P.'s in the town where we live have been put on part-time working only when the N.H.S. Trust ran out of money through paying Circle Health to run Hinchingbrooke Hospital. It was the first N.H.S. Hospital in England to be run by a private company and all the money was spent, yet the place was barely safe. 20,000 people live here and no one is able to get to see a G.P, we are all still paying off the Trust's debts for Circle Health. The correct spelling of the new wonder drug for rheumatoid arthritis is Jakinibs. Short for JAK Inhibitors. They have had it in America since 2012. There is a brand name beginning with "T" but I can't remember it and will get back to you on that one. It cost £2,000 a month, so there is not much hope of anyone getting it, in reality! Best regards,

  • Our replies overlapped! As you'll see I did find some info on JAK inhibitors (Janus kinase) but I can't find anything suggesting they're being used just yet in the UK. I think the FDA in the US have approved them for some time now, since 2012 though it seems NICE have suspended further development of the guidance for Tofacitinib (the drug suggested for use in RA), as per this page

    What a truly awful experience, quite how you'd do it without a GP I don't know as all my experience of working within a Practice is related to that of course but he (or rather you both as this involves you too) needs referral to a recommended Rheumy, one who takes his speciality seriously & has more or an idea of treating his patients with multiple other health issues accordingly whilst under his care. Maybe if you're willing to post another question including where you live one of our members who lives in your area could recommend a Rheumy with more than an ounce of humanity. The treatment you've received so far isn't acceptable, you know that but did you know that you have access to something called PALS at the hospital you attend? They deal with issues like this, that would be my first point of contact, if you google your hospital you should find a number for them.

    Any more help just ask, we're here to support one another & I think you both need plenty of that just now. :)

  • I've just come across a new type of biologic called JAK inhibitors, could that be what you're meaning? These are in tablet form & "are showing promise" but also that "there are still many questions to be answered about these drugs". Apparently there are possible side effects, anaemia & some elevation of blood fats" according to a Rheumatologist in Seattle. This type of drug if they were ever licenced for use in the UK would only be offered to those who have failed on the available anti-tnf's & to qualify for these it's necessary to have tried & failed on DMARDS, this link explains further page 27 explains who qualifies for anti-tnf's & biologics.

  • Hi, I am on sulphsalize I've only been taking it for around 2 months and take it with a tablet to line my stomach. To be honest I've had no side effects at all and it is definitely starting to work as I feel much better now and I hope that continues. I sincerely hope you're husband can get back in touch with the Dr's and give the medication a go as it sounds that he is getting worse and uncontrolled RD is pretty nasty and doesn't usually get better without intervention.

    Hope he feels better soon.

  • Are you aware that you have the right to request a second opinion, in other words, a different rheumatologist? Your GP should be able to arrange that for you, or you can contact PALS at the hospital (Patient Advice and Liason Service).

    It's not all that unusual to have to persevere a bit to find the right rheumatologist. It's not necessarily easy to achieve, but it's usually worth it.

    Assuming JAK inhibitors are a new line of biologic drugs, there are plenty of other biologics that are available in the UK. Given your husband's other health issues, it's possible that some rheumys would put him straight onto biologics (I'm not sure though) or at least assess his treatment plan much more carefully.

    You sound really angry and plenty of us have been there, but you need to act now to move things forward. Self-prescribing could be disastrous, going without treatment is very risky too.

  • Hi and many thanks for the reply. The Consultant we saw wouldn't answer any of our questions about the drug he prescribed. But people on here seem to know more than he did and it has been helpful to join the group. I didn't see that there was a Group until today, which is a pity. Because we didn't get any answers about whether my husband's prophylactic antibiotics for his very severe chest condition would continue to work, we had to delay the treatment but we had already done what you suggested and insisted on a second opinion. We just went on the logic that "You can quite easily die of lung disease, but swollen painful joints wont kill you!" We see a Rheumatologist at another hospital on 30th June. My husband said he would think about giving the Salazopyrin a try in the mean time, as you only take a very small amount at first and he would still only be on a lowish dose by the 30th June. My thanks to everyone on here for there helpful and knowledgeable advice - it's more than we got from the Consultant!

  • I can appreciate that this is all very worrying for you, and it must be quite unsettling not to have a clear idea of how you can best help your H. However, from my perspective I would be trying to focus on trying to get access to a specialist rheumatologist, and a GP, and build a good relationship with them. Like NoMoreHeels I wonder whether there was a bit of a misunderstanding - my GP doesn't discuss my RA with me as she admits she doesn't know enough about it since she's a generalist not a specialist.

    There are a range of drugs available, and some would be ok for people with lung disease, but you need to be under a medical team to get them and for the close monitoring needed once you're on them. So the medical team is the key to it all. And even if the rheumy seemed young, it does take many years to get to that level so he can't be that inexperienced.

    I'd also certainly feel more comfortable with one of the drugs with a track record than a drug that's new on the market, so I wonder whether looking at new drugs is a bit of a red herring for you? Sometimes we do just hope that if we look hard enough there will be a magic solution, but sadly life is rarely like that outside the story books. I'm also hugely sceptical about stories of wonder drugs with no side effects - as it really depends on the person as what suits one person really won't work for another. And especially with the variability of RA it can be a slow haul to find an effective treatment.

    Sulpha may be old fashioned, and cheap but it can be hugely effective and may well be safer for your H than some of the expensive biologic treatments that could increase the risk of serious infection, especially as he's over 65. I've been on it, and several others, for years now with no problems. And have had a number of different antibiotic treatments alongside over the years without any problems either. Some people don't get on with it, as you obviously didn't, but it is a very individual thing.

  • Many thanks for your helpful message. My husband walked out on the rather cocky, young Rheumatologist in March and has had no treatment, apart from anti-inflammatories I gave him that were my own, (Diclofenac and Naprosyn.) More of his joints are becoming swollen and painful and he looks really ill and is always asleep. I still have the Salazopyrin prescription and perhaps I can get him to try it as several of the contributors on here, have found it not too bad in the side effects. We are awaiting an appointment with an alternative Rheumatolgist at another hospital but it is not until the 30th June. I wished I had thought of joining this group earlier but did not know it existed until today, as one way and another the questions the young Rheumatologist refused to answer eight weeks ago, have been satisfactorily answered by the suffers on here!

  • While your husband clearly needs a GP & a RA consultant he may also benefit from a consultant in elderly medicine. They are one of the few hospital consultants who can juggle different medical needs & different medications, especially when they clash or potentially clash. They will also correspond with other doctors.

  • Regarding your question about hair loss whilst taking sulfasalazine I did experience this at the start of taking this drug, it lasted approximately 6 weeks but wasn't an excessive amount, just more than was normal for me. It wasn't noticeable to anyone else as fortunately I have quite thick hair. Sorry can't comment on the other issues but hope you get some treatment sorted very soon. x

  • Many thanks, I'll tell my husband, (he's quite ill and refused to take the drug when prescribed it in March. More of his joints are becoming swollen so I thought I would ask the folks on here, if anyone had taken it, and how bad the side effects were, in an effort to persuade my husband to at least give it a to try!)

  • I got up to maximum dose of Sulphasalazine for over a year and didn't notice any unusual hair loss, I would have been 50 at the time.

    Did however make me sensitive to the sun. Used factor 50 abroad and 30 at home and still got a tan! No other side effects in my case.

    Does make your urine and sweat yellow causing stains on clothes which are difficult to remove.

  • My Rheumy and I pulled it after 15 weeks of not working.

  • It is always bit of trial and error with RA treatments.

    If you follow the forums you will see that many people take a while to find the right drug or combination for them. Some are frustrated to find that side effects rule out drugs that are working for them .

    I started on sulfasalzine, added hydroxychloroquine and methotrexate over the years as either disease progressed or response to drugs reduced.

    I am now on Cimzia, methotrexate and hydroxychloroquine.

  • I've been taking Sulfasalazine now for nearly three years, with little side or no side effects.

    I'd recommend it.

  • Many thanks for that, Ill tell my husband.

  • I have allergic reactions to some antibiotics and always have bad stomach issues when I have been given aspirin for long periods of time, to thin blood. I was very worried about starting Sulfasalazine and got a lot of great advice from this site. My Gp prescribed a stomach protector and I started my dose increase much more slowly, I take my tablets after food. So far no stomach problems and now feeling some relief of symptoms. I understand how you feel about some consultants, I think a lot of people have similar frustrations and anger at some point in their journey. Is it possible to get an appointment with a consultant at another hospital. I had to go to another area to get my diagnosis and treatment. All everyone wants is to be able to live the best quality of life they can. I have a family member with bronchiectasis, its difficult. Good luck . x

  • I have taken that drug coated for the stomach and not coated. I did take it with antibiotics. I did not lose hair. I have taken Humira, Simponi, Remicade, Rituxin, Methotrexatde, I have been to Mayo Clinic for it and still am going there. There are some new drugs but Mayo is not in a hurry to get me on them because newer drugs do not always work better. They are taking their time letting each drug get into my system and letting it work itself out.

    For Orals I had the Plaquenil, leflunomide

    There is no rush to get me on Xeljanz. (the pills) or tocilizumab either.

    The doctors really like the ones with a longer track record, it seems.

    I do know some people from support groups that take Xeljanz and the

    outcome is spotty meaning some swear by it and some dislike it,

    The big deal about it is that it's an oral rather than a shot. I've been reading

    as much as I can about it and I keep hearing that.

    Rituxin working well but I feel dragged down and tired, a little breathy..

    I only get 2 doses every 6 months with methotrexate weekly. Now THAT

    will make you lose hair - the methotrexate will.. quite a few report that.

    I take folic acid but I am still getting hair strands coming out.

    I understand that you are deserate to find a good fast working drug

    to stop him from getting worse. For me it was the DMARD that stopped

    My disease from progression. Methotrexate is my drug.

    My Rheumatologist ( IN the USA) Loves methotrexate. He says people

    go from Wheelchair to walking again... I didn't have anything miraculous

    happen to me for sore, swollen wrist or pinky or middle finger that

    was swollen, red and felt hot..

    I feel guilty in the USA because we get to go in and ask for specific

    drugs so you will find that many in support groups will tell all..

    The Rheumatologists have a lot of favorites and mine didn't like that

    Mayo chose Rituxin for me but by golly, it's working and working well..

    I'm getting better, Some of that stiffness that made me feel like a

    wheelchair was my future is going away a little more but Simponi

    had a profound effect too..

    I was sent to Mayo Clinic for neuropathy first and then they made the

    decision that I should let them treat me for Inflammatory Arthritis (RA)

    because that was progressing in my spine.

    Lots of luck and well wishes for your husband.. remember that RA drugs

    that are well established CAN work better than new ones According to

    Mayo. They are eyeing up Enbrel once again for me. They are not pushing new drugs there, Or not always.

    This is only my story. Someone else might have other experiences.

  • Xelijanz (tofacitinib) is still in clinical trial here in the UK Karen, phase 2 & I understand would only be available to those who aren't suitable for or have failed the available anti-tnf's/biologics. I wouldn't think scruffyrabbit's h would qualify for this class of drug as SSZ is the first DMARD he's been prescribed.

  • Thank you. =) I didn't know that. She asked about USA drugs. New ones.

  • One thing that came into my mind with the fast progression of your husbands condition is Lymes Disease... there are 3 tests out now that can detect it.

    I do not mean to add to your worry but it's been mistaken for conditions like sero negative or even in positive people.

    You may clunk me over the head for worrying you some more but I live

    around the Great Lakes (Wisconsin) and we have people that just cripple

    up so fast with the undetected disease. Now it''s common place to include that test over here. We have ticks because we are heavily wooded forest here..

    Again, pardon my interruption if this is unwanted information.

  • My hair did badly fall out when I was on sulfasalaIine and got so thin that I came off the drug. However, I was also having lots of kenalog injections so I was never sure what exactly was causing the hair loss, or it could have been the active ra causing it. I may never know.

  • Many thanks for your reply. I have taken both Salazopyrine and Prednisolone in the past. The Salazopyrine seemed to cause me stomach pain, sickness and diarrhoea whilst the Prednisolone caused hair loss! I had the type of arthritis which was causing my retinas to become inflamed and was going blind - the proper term is posterior uveitis, (not exactly the same condition as rheumatoid arthritis,) so I had no choice! Eventually, the inflammation at the backs of my eyes settled, leaving me with good remaining vision in one eye, and my hair re-grew! My husband is losing his mobility through RA and he will have to take appropriate drugs soon.

  • Hi Scruffyrabbit

    I have been on Sulfazalazine for 5 and half years with no problems whatsoever. The past 6 months I have had to take alongside it because it became less effective. I know we all tolerate medications in different ways but I had no side effects at all so would recommend your husband gives it a try

    Hope it works out for you both x

  • Many thanks - my husband is definitely going to try it now as so many people on this site have had a positive experience with it.

  • Sulfasalazine, Methotrexate and other DMARDs, plus a short course of prednisone to give almost instant relief and tide new patients over while they wait for the DMARDs to take effect (that can take upwards of 6 weeks) ....... all these are pretty standard treatments.

    In your husband's case, the tricky thing, the issue that means you need a rheumy who listens, is his other conditions. Obviously both of you want to be very, very sure that any drugs he takes for RA will not clash with other drugs he takes or make his lung condition worse. I'm wondering whether your husband sees a specialist for his lung condition and, if so, whether it would be a good idea to contact him or her and ask about any possible problems with typical RA drugs.

    Alternatively, you could write to your GP, explaining that you know he's busy but just need some reassurance / information about possible complications / contraindications with RA drugs before that important rheumatology appointment in June. It sounds as if everything's got a bit fraught and it is a good idea to try for the best possible relationships with any medics associated with RA. Rheumatologists in particular are in short supply and busy - unfortunately it sometimes feel like we're competing for their time - so being well-informed and cooperative etc. etc. can help things along.

  • Hi postle2, and thanks for your information. We did ask the somewhat arrogant young Rheumatologist we saw, to contact my husband's Chest Physician, (whom he sees once a year, every June, at another Hospital,) but it was just as if he didn't hear the request, the same as the questions we tried to ask him. We even tried asking him if my husband would be "so immunosuppressed on the two drugs, would it be dangerous for him to have human contact in theatres, at music festivals, etcetera," but again, he simply stared right through us! It was a big off-putting to say the least! I myself have had an inflammatory eye condition for years and attend a famous Eye Hospital in London. They once ignored all my other medical complaints when prescribing for my eyes and I lost my patience and said:- (I'll send my eyes here on their own next time, in a Jiffy bag!") It did the trick and I managed to get them to regard me as a whole person, instead of just something with a none functioning bit part!

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