Hi I was taken off methotrexate last July ( I have PSA ) due to to stomach issues and extreme hair loss and told wait six weeks and start on sulfasalazine Unfortunately my Gp rang and started me on some other drug to help my kidneys and decided to lower my Lioythronine from 60 to 40 perday. I felt very ill over next few weeks just like when I was hypothyroid but also very sick and full of indigestion. Gp never rang back to check as promised so I put myself backup to 50 mcg liothyronine a day for next 2 months from the last reserves of my stock, then booked a blood test and made appointment to see another Gp. after an argument he agreed to put my doseage to 50 but was most unhappy doing so and shouted at me that he was going to write to my consultant about this even though my blood test was within range now I just said yes please do as I would love to see one. but this other drug I had been to that would rescue my kidneys had actually made them slightly worse when I asked the Gp to check the blood test to which he replied well if it made you ill you should have stopped taking them. Needless to say I have only just started taking the sulfasalazine. I'm on day four and have a pain in my abdomen and very loose bowels but think I need to persevere longer to see if it pans out ok. Not seen a rheumy for well over a year and was given sulfasalazine via phone appointment last July so two questions for advice please, I'm sure my prescription said 1 pill in morning week 1 one morning and night week 2 3 pills week3 and finally 2 morning 2 night week 4 onwards. When my prescription bottle came back it said 1 at night week 1 then 2 morning and 2 evening thereafter does this sound about right please. Also will this current medicine help with inflammatory arthritis in my heel as for last three months Ican barely put it to the floor, it wakes me in the night despite tiger balm and support sock etc but ct scan said it was too dangerous to give me a cortisone injection where it was so badly swollen. does anyone have any advice on what I could treat my heel with as Gp said ibuprofen but Rheumy said no ibuprofen so just confused and sick of hobbling. Any advice would be great thanks .
sulfasalazine advice please.: Hi I was taken off... - NRAS
sulfasalazine advice please.
Hi Hustler , it sounds like you're dealing with a complicated situation there, it can be so challenging balancing medications, side effects and symptoms for multiple conditions (I have autoimmune hypothyroidism and inflammatory arthritis too).
To your questions on sulfasalazine, when I first started it I gradually increased the dose as you described - one tablet per day in the first week, two in the second and so on up to four in the fourth week. It sounds like you've been given conflicting information about that process and it would definitely be worth re-checking because the gradual increase is supposed to help with side effects. Personally I do find sulfasalazine beneficial for inflammatory arthritis alongside other medications, but we all vary so much in what works for us. It doesn't help that you've been given different advice about the ibuprofen too. In your situation I think I'd go back to rheumatology and ask for clarification on all of this and also pain relief if ibuprofen is a no-go. Do you have a rheumatology advice line or some other way of contacting the team? I really hope they can sort this out for you quickly as it sounds like your symptoms are really difficult at the moment.
Thank you so much for your reply about sulfasalazine it gave me a bit of hope about this agony in my heel easing slightly. Yes we have a helpline at our rheumy dept we leave a message and someone is supposed to ring us back within 24 hours but being so short staffed it doesn't always happen that's why I have had last four appointments cancelled so I try not to bother them but I am getting anxious to try to dose correctly and as I'm having side effects already on only one tablet daily currently it seems a bit harsh jumping up to four a day next week so thanks again for your help.
You're very welcome. It's hard when the teams are so short-staffed but I really think contacting them is warranted in your case because of the conflicting information you've been given. I'm sure (or would hope) they'd want to hear from you to get that clarified, especially given the other medical factors you're contending with.
I have left a phone message to helpline so hopefully they will return my call on Monday. once again many thanks.
I said once to a GP about not wanting to be a nuisance but she said your a service user and you should persist if you're not well. It's difficult when you're ill to have the energy to persist but I think you need to.
I’m not sure you should increase drug doses and Thyroxine can do harm as it’ll cause heart issues so be careful. As for kidney issues what drug have you been advised will rescue them? As far as I know there is no medication which rescues kidneys and it’s not an issue to be toyed with. If you’ve a drug induced kidney issue then the medication will be stopped and steriods can be prescibed but it’s in a very very high dose under consultant supervision. I know as it happened to me. I have CKD, Hashimoto’s RA etc and take 150 mcg of thyroxine every day so 40/60 is really a small amount and it could be bad to just increase it. I’m my view your best bet is to go to GP and ask for T3,T4 and TSH to be tested and then discuss the issue. But be careful as all NSAIDs like Ibruprofen are totally forbidden for people with low clearance rates. In fact many medications are adjusted so you must talk to a medical professional. What might be recommended as helpful for a person with CKD could be very dangerous including over the counter stuff.
Hi thanks for your reply. The drug my Gp rang and wanted me to try was called Dapagliflozin which he said would help my CKD stage three of forty years to improve and maybe also help my blood sugar as I'm diabetic but diet controlled for many years now. I was told he would ring in a month or so and could and could carry on until then. After three months of feeling sick and ill I asked for a blood test and there was no improvement in blood sugar and my kidney function was slightly worse so needless to say I stopped taking them. It was Liothyronine that I was taking not levothyroxine. Each 20 mcg tablet is roughly equivalent to 60 mcg levothyroxine I think , so suddenly dropping from 60 to 40 is taking 1/3 of a days dosage from me in one go which was far too big a drop and over the next six weeks I became more exhausted confused and gained weight and felt really unwell so it has been a lot to contend with in short space of time, and to honest I not entirely sure a gp should have actually insisted I drop that amount without another blood test consultation etc but he insisted. At the moment I'm just taking Paracetamol which doesn't seem to touch the pain so will have to get in touch with rheumy helpline and ask and also check starting dosage on sulfasalazine I think. Taking your advice if that's not successful as sometimes no one rings back in our area i'll seek medical advice so many thanks,
I have close to end stage CKD from an AKI about 6 years ago. I'm hanging on but had always been told no to any NSAID and definitely no to anything OTC I've been offered SAL but my Nephrologist said Azathyoprine or LEF both of which are used in transplants. It was a drug thats taken with LEF that caused by AKI so I've been on AZA since the original AKI it works very well with no side effects. It might be worth asking about that but your Nephrologist is the expert and must get copies of all your RA consultations. Mine does and did last year ring and say dont take this and contacted RA as the medication is really kidney unfriendly and I don't have room to take any risks. I'm not diabetic but why are you not on Levo as it's the one most commonly prescribed. I dont know but it all sounds like you really need to talk to your Nephrologist are they aware its not Levo but another thyroid med. I don't think stage 3 is actually that bad as our kidneys age as we do, like teeth and I'd suggest suggest you might find drinking more water helps and no to gravy (sad) cola, bananas and grapes too. But most important is fluid and drinking about 3 pints a day plus tea and coffee etc will help. x
Thanks for the advice on fluids i wished I had read this first as just finished a banana on granola and greek yoghurt for my lunch. I havn't seen a nephrologist for at least 20years since I moved to east Yorkshire from the midlands, all they ever tell me is it's still stage 3 from the blood tests and as my mum died of kidney failure the Gp said I probably will too. So never had any real advice on CKD only what I've read on the net. I'm on liothyronine as its a direct form of t3 only as t4 (levothyroxine ) has to convert to T3 through your liver and after twenty years or so on t4 it just stopped converting so pooled in my blood around all my joints making them extremely painful until a blood test revealed the cause and I have been on T3 only ever since. I will definitely ring my rheumy again.
Your GP sounds dreadful and I’d ask to see a Nephrologist if your GFR is declining as although stage 3 isn’t going to cause any real issues it might help to exclude kidney symptoms as to be honest most people unless they have polycystic kidneys don’t have any. I was GFR 8 with no pain or tiredness at all just a weird taste of petrol when drinking wine for a while. So I’d just stopped then got a phone call from a routine blood test and all hell broke loose. I think your GP should and I’d ask him/her again as I’m 71 and lead a normal life refer you but really kidney issues aren’t a death sentence as a parent died from it. That’s utter tosh but kidney always takes priority over RA as it kills. Don’t take Ibrofen ever it’s toxic to kidneys and whilst it might not make matters worse, if it does it’s then too late. So err on the side of caution and be persistent and talk to a medical professional asap.
I think you should contact reumatology, it sounds like you really need to be seen. Your having significant side effects and they really need to be involved with your kidney and thyroid making you a urgent case
I'm on two tablets twice a day but was on three twice a day when I stopped methotrexate due to liver issues. I had to get enteric coated (better for your stomach) due to nausea and other issues with them. I'm not allowed ibuprofen due to heart issues but get to take naproxen only when really required due to kidney issues with them. Medications are complicated phone your rheumatoid nurse or speak to the rheumatoid consultants secretary.
Hi, I had a swollen ankle which my rheumatologist gave short course of oral steroids to ease it while waiting for my Methotrexate to start working. Maybe that might help your foot, but obviously your situation is different to mine. Good luck with sulfasalasine. I'll be starting it soon because Methotrexate caused hair loss for me too.
I will ask if I get a reply in the morning because I cant bear my heel to the floor ( for at least three months ) and walk on sole of left foot first then limp it is now affecting my left hip and can't lie on that side which is a bit scarey. Good luck with sulfasalazine hope it works for you.
just to confirm that is how I was introduced to Sulfasalazine.
1 in the morning first week,
1 morning & evening 2nd week.
2 morning and 1 evening 3rd week
Then 2 morning and 2 in the evening 4th week then I’ve continued on this dose ever since. I also got 2 weekly blood tests which then increased to 4 weekly now on 6 weekly.
I am also on 10mgs methotrexate a week and 6 days of folic acid. Hope this helps.
Thank you I'm sure this is the dosage I saw on the prescription before I handed it in not what pharmacist had written. I was also on folic acid 6 days a week while on methotrexate and thought that I had read somewhere you also need to take it while on sulfasalazine, or maybe that's me getting it wrong.
I’m not sure about that, but my understanding of folic acid while on methotrexate is to protect healthy cells being compromised and alleviate sickness x
Hi @Hustler when i started sulphasalazine it was
wk 1 one morning
wk 2 1 more 1 eve
wk3 1 morn 1 lunch 1 eve
wk4 1 morn, 1 lunch 2 eve
wk 5 2 morn 1 lunch 2 eve
it was a printed out NHS lothian sheet so i guess it might be quite common, but we are all different, the top dose depends on your body weight.
for me I was told no ibuprofe tablets but ok for gel, so that might be part of that conflicting info.
foot pain, a cold bottle/ can from fridge to roll it on might help
Thank you for the dosing info, think my pharmacist has made the mistake. Yes I have gel also given by Gp though
Hi there, I also have PsA and was wondering if your "heel" pain is actually in the heel itself or the achilles tendon? If the latter, then this is a very common problem for PsA sufferers. I found that sulfasalazine did eventually give me some respite from this and other problems. The effect was greatly enhanced when Mtx was added but obviously this isn't an option for you. What has helped most for my achilles, though, has been physiotherapy. Our hospital has a specialist rheumatology podiatrist who can recommend exercises to help. If you see a normal podiatrist, it is important to make them understand that you have PsA. Before my diagnosis I had seen a standard physiotherapist. The exercises he recommended certainly helped the tendonitis but hurt other joints in the process. The specialist gave me gentler exercises to do.
Thank you for that, not too sure about my heel as pain is underneath but in centre of heel and is swollen. but then it burns and throbs most of the night. Had ct scan on it and was told that there was a liquid ball around it to keep it protected but my tendon that joined heel bone was swollen and he cannot give me a cortisone injection as it was to dangerous. Why I don't know but he said until new meds quick in just take ibuprofen regularly. When I told him cant take them he looked and said I'm so sorry but there is nothing else I can do.
I take two sulphasalazine tablets a day one in the morning and one before bed. This supplements my baricitinib tablets which is a JAK inhibitor. I was told by rheummy that I can take up to four tablets of sulpha a day two and two if pain is bad. They are anti inflammatory drugs. The combination helps me. It took a week for my stomach to tolerate sulpha and doc put me on omeprazole for my stomach which solved the problems completely. Best of luck to you and keep persevering 👍
Thank you I shall as I cannot carry on like this.
Sounds like you are struggling and need to be seen. Hopefully, you'll get a call back soon.
I have been on Sulfasasalzine for a few years now, and I'm underactive Thyroid. Sulpahzalazi was introduced 1 in morning, 1 at night first week then increased weekly to help with side effects. I take 6 tabs per day Sulfasasalzine. This is paired with hydrochloriquine and etoricoxib for inflammation.
Like you, I was previously on Methotrexate, self injecting until I could no longer tolerate it. Sulfasasalzine has been a godsend for me, like you, I couldn't put my foot flat. It was like I was walking on shards of glass.
Now and then I need to stop Etoricoxib as I get nausea taking it without a break. I take Lansaprozole for that, but it's great for inflammation. I no longer have pain in my feet, although I still have flare ups in my hands.
I also have osteoarthritis on top of rheumatoid and had a total hip replacement 18months ago, I now have osteoarthritis in my other hip and both knees, but again the Sulfasasalzine really helps me and I am able to continue working full time.
My consultant has always encouraged taking ibuprofen if needed, especially during flare ups, but I know all cases are different depending on meds and other conditions, but I really hope your RA can help you get settled.
Thank you, it's reassuring to hear something good about sulfasalazine really working. It doesn't help as I have only seen two consultants in the last three years an they have both left now hence hence the constant cancellations but fingers crossed for tomorrow, I may get some help.
one thing just popped into my head as I am also on thyroxine and have ra. Is that no one told me to take the thyroxine earlier than the other meds. So I now take the thyroxine on an empty stomach as soon as I get up. Then have breakfast etc and then take all the rest of my meds an hour after the thyroxine. It will help with absorption and them not affecting each other.
As far as sulfasalazine goes in my book it feels as much use as a chocolate teapot. But you have to try these things to find out if they work and we are each different. It took several weeks for the nausea and stomach issues to settle for me. But they did
Good luck
Sorry another q. omeprazole and sulfasalazine 
Sulfasalazine rash
Sulfasalazine added to the mix😒
Nausea Methotrexate or Sulfasalazine 
Sulfasalazine 
