Can you lovely people out there tell me if taking an immune suppressant is the only treatment for RA or similar autoimmune conditions??
My antibody tests for RA came back negative but my consultant has diagnosed me as have palindromic rheumatism, which I know from asking questions on this site that it can be a precursor to RA, but all she offered me treatment wise was immune suppressants - which I refused due to my thyroid illness and dietry restrictions as I dont know how it would effect this (I always research pro's and con's of taking any drug before accepting that this is the only way forward). Is there no other efective treatment available out there for RA or PA???
Thanks for reading.
Moggie x
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Moggie
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I didn't get so far as to know what particular drug I was being offered, she just said the words immune suppressants and I said no. I try very hard not to take drugs at all as I am lactose intolerant and to find drugs without lactose in them is like finding hens teeth. I have to buy my own lactose free thyroid meds due to the NHS refusing to fund them.
It would be worth finding out which one your rheumy is thinking of so you can read up about it and then decide what to do. Helixhelix has given good info.
From what I've read about palindromic rheumatism it seems hydroxychloroquine could be the drug used? but not necessarily.
I will speak to my consultant regarding sulphasalazine and see what she says but I dont have much faith in her as she seemed frightened of me as I was asking quite a few questions. I need doctors to explain things to me and if I dont understand or agree with what they are telling me I will question and disagree and this does not go down very well with some doctors whereas others welcome it. This consultant seemed reluctant to engage with me so I may have to insist of seeing the actual consultant and not her understudy.
Also, it is not an immune suppressant - plenty of discussion about that on here and an official document from rheumatology department. My rhuematology nurse also told me it is not an immune suppressant.
Neither Hydroxychloroquine or sulphasalazine suppress the immune system. Others, like MTX, only have a small compromising effect at the doses we take.
And some studies have shown a positive effect on thyroid disease from using biologic drugs for RA.
If you have palindromic RA you might find you only need short term treatment as if coupled with lifestyle changes you might be able to get it back into its box forever.
I will do some research on the drugs you have mentioned to see if any are suitable for me to take as I am gluten, lactose, and many other things free. Unfortunately almost all tablets have lactose in them and, as I have mentioned above, I buy my own thyroid meds due to this plus I have to buy my own liquid vitamin D and have found only one brand of iron tablets that do not contain lactose. I did ask the consultant if she could offer me anything other than immune suppressants and she said no!!!!
I have had to restrict my diet in quite a dramatic way to get my thyroid condition under control as I have the autoimmune version of thyroid illness and found than many foods made my condition almost impossible to manage successfully.
I was a bit suprised that after only two appointments I was offered an immune suppressant and got the impression that this type of drugs is prescribed without much thought or care - is this right????
Have just looked up sulphasalazine and joy of joy's it is lactose free so will be asking my consultant about this drug, although the possible side effects are quite alarming.
Are you sure about hydroxychloroquine not suppressing the immune system? I tried it three times and developed a severe chest infection each time, coughing up blood which I put down to the hydroxychloroquine. I have had a cough for nearly 20 years, recent x-rays showing bronchial thickening and a tree pollen allergy for ten years which is worse every year along with breathing difficulties for about six years.
I would particularly like to know as the middle joint in my thumb is currently badly swollen with stinging pain and I would like to give the hydroxy another try. I am reluctant to do so as I assumed it suppressed the immune system and am worried about being made more prone to picking up Coronavirus. If hydroxy does not suppress the immune system, it sort of answers my questions. It is puzzling though how I managed to develop a severe chest infection and cough up blood every time I used it which happened very early on.
The consultant said hydroxy was not a proper Dmard and also did not think the hydroxy caused the chest infection - but I am unwilling to risk it at the moment.
If you look at the charts and score cards for assessing our covid 19 risk, they clearly say that hydroxy does not increase risk as it is not an immune suppressor.
And you've probably also seen all the stuff about it now being trialled as a treatment for covid. So who knows, it could actually protect you! Although this is not yet proven.
Corticosteroids, MTX, LEF & biologics, suppress or modify your immune system, affecting your body’s ability to fight off germs. It's advised that patients stop these drugs & report it if they develop signs of infections. Other commonly used RD medications, eg SSZ & HCQ, aren't associated with increased infection risk. Could it have been pure coincidence you happened to be on HCQ each time do you think?
Well I'm not really sure what your asking Palandromic just means moves about my RA does and I do also have Hashimoto's Thyroiditis (autoimmune )amongst other issues. In short no there isn't ! You maybe read diet might control it well I'm Celiac and so can only say for me thats made no difference. It is vitally important to understand that the meds do work well and RA can affect your blood, lungs etc its not joints so its really important to control it.
Why are you so worried ? a few more people died last year from taking paracetamol yet its widely available . RA meds are in some instances require regular monitoring so you don't just take them and are left to your own devices. its true some have side effects but in most cases they do fade. So please don't be worried and if on med doesn't suit you there are a lot more. Best of luck. And what have you got to loose trying a medication.
Thanks for reply and I was asking because I was told that there was no other drug available other than immune suppressants, which I am reluctant to take due to my thyroid illness as it has taken me years to get this under control and will fight long and hard not to upset the apple cart. As RA effects people in may different ways and severity so does hashimotos and I do not want to ease my PA pain at the expense of my thyroid illness which, compared to some people, is being successfully controlled.
I am led to believe that, unlike RA, PA does not damage the joints, which is the main difference between the two.
I am afraid I am one of those people who will do hours of research and come to an informed decision as to what I think is best for me and then I will discuss it with the specialist in question. I worked well with my endo in this way with good results.
Jolly good and I hope you do well, just be aware that RA has many forms and not all are visible. My Hashi's is fine and been like that for over 35 years it is just worth considering that RA meds can be expensive and no one is going to give you something you don't need and cost the NHS money it doesn't need to spend. A lot of research can be confusing and so please do look up the NRAS website it has loads of good information about meds and questions to ask.It is a very good website and you can ring the helpline too. I'd add that my RA is Palindromic and I've had Pulmonary Embolisms and other clots all linked to RA and a few other issues so feel its vital to control but I'm posative for RA and pANCA too so have a lot of immune issues as well.
I am sorry you seem to have taken offence to my question and answers.
I am not asking the NHS for expensive drugs, I would prefer no drugs at all and have, as previously said, refuse immune suppressants as I do not think they are needed at present but will be going back to the consultant for a proper discussion regarding my options.
I did not think that at all ! and do understand how you feel about the drugs just feel the consultant is offering you something they must think you need or would not have put the meds forward. Had I not been taking them and my RA controlled I might have had terminal clots and the after effects of that were really nasty my point was just don't take risks and so yes ask more questions and please look up the NRAS website.
It’s usually best to listen to your rheumatologist. There are Dmards you can take which prevent Irreversible joint damage which should your PR Progress to RA/RD ....you will be very grateful you did.
Get your rheumatologist to explain the type of drug & it’s action she is thinking of prescribing, Rheumatologists often deal with patients with Thyroid problems, so she would not be offering drugs contraindicated for people with that condition.
Why didn’t you ask what your rheumatologist was thinking to prescribe & what effect it would have? Ask her to explain the degree of immune suppression she is considering, Most RA drugs control our immune system, they don’t necessarily completely suppress it.....that is not recommended,
With PR...if you take nothing it could go away, but it could also be heading to become full blown RA,...As I know full well, & if you have not taken a Dmard you are not able to get ahead of the game to controlling any damage ..not only to joints, but internal organs , that can start to occur at any time.
If you are not willing to chance that..... Why don’t you read through the answers you have received here....adding up who has replied to you ....you have a fair few years of experience of RD here....then ask your rheumatologist to fully explain the treatment she advises.
Or you could always find another consultant & start over.
I was not seen my a qualified consultant but a trainee and to tell you the truth she didn't seem to know a lot about the subject. She was confused regarding my symptoms and was not interested in my auto immune history. I had an episode over Christmas where the huge lump appeared on my knee for no apparent reason - have since found out it was a knee bursitis - and when I was explaining this to the trainee she looked at me like I was mad.
I think me next step will be to ask to see the actual consultant so that I can gain the information I require to make an informed decision regarding treatments and options.
I am presuming you saw a Senior Registrar which is often the case....& in fact she could be a consultant rheumatologist next week...so don’t belittle her qualifications too quickly ....she will have been a Qualified Rheumatologist & will have studied for probably a good ten years before attaining that position & a lot of Registrars are often more familiar with the newer RA drugs than an older consultant.
Maybe if you had asked her what you have asked here & had not just refused an unknown drug you knew nothing about , she would have explained to you more fully her reasons for suggesting the drug she had in mind.
But the advice given here ....that having been diagnosed with PR, it would probably be beneficial to take a doctors advice to pursue some sort of Dmard.....Is something worth thinking about.
Hiya Moggie. The lactose free option for hydroxychloroquine, should that be the preferable option, is Quinoric. You could check with the manufacturer, Bristol Laboratories, just to be sure but I think that's correct. Unfortunately it is the one brand of HCQ that if there are to be notable side effects it's this one, that's not to say you're guaranteed to have them just it's more likely than say Plaquenil with lactose. I appreciate how difficult it can be to obtain lactose free meds, my h is prescribed 12 meds & only now after around 10 months is he finally getting them all in the lactose free options. It can be a pain, he's always to check when he's given them at the chemists as invariably the 'original’ med is substituted if the Pharmacist hasn't dispensed them. The assistants don't seem to realise how poorly it can make a person, & then he's another wait until the correct med is ordered & received.
Please try not to focus on side effects, you correctly say they are possible, but you may not have any at all, or if you do you could well find they're tolerable, or ease, even go, the longer you take them. Even the most sensitive of people can get on well with their meds for the benefits they bring. They often tend to outweigh the option, erosions or damaged joints, thinking as an investment should you be one of the 50% who are diagnosed with RD some time in the future, particularly as you've already been diagnosed with one autoimmune disease. You'll have protected your joints in the meantime. We also have regular blood tests to keep a check on how we're responding to them, including our vital organs. Just so you're aware, of the meds your Rheumy will be considering none will be particularly suppressive, none of the initial DMARDs are, especially those prescribed for PR, it's only when the more advanced RD is treated the big guns are prescribed, anti-TNF's, biologics & JAK inhibitors. Have a proper talk with your Rheumy, ask which 'immunosuppressants' he/she has in mind, which is considered would be the better option for you. Try to listen to the advice given & the answers to your questions without dismissing anything out of hand. That way you can be fully informed & hopefully your Rheumy will appreciate you're only being cautious & really do wish to treat your PR, help ease symptoms & increase the time between flares.
Many thanks for your very informative reply - and your understanding on lactose free meds as many people just do not get how important this is to someone who is lactose intolerant.
Will certainly take on board your suggestions and when I do finally get back to see the actual consultant and not the understudy (not disrespect intended) I will certainly be putting forward all the medication options suggested on this site.
I order my repeat prescriptions on line and make sure that they are the lactose free option (Teva is the only manufacturer of lactose free iron tablets!!!) plus I always check BEFORE I leave the chemist that they are correct as, like you say, not only is there a long wait for the correct ones but once they leave the chemist they cannot take them back and are then wasted.
I think it is very unfair that if you are diagnosed with one auto immune illness you are three times more likely to get another one as, once you immune system has destroyed one thing - in my case my thyroid - it then goes on to destroy another.
Thank you again for your kind and informative reply and I will certainly take on board your suggestions.
Hi Moggie, Couldn’t have said it better than NMH has. So sorry you have got thyroid problems too. I got diagnosed with Hyperthyroidism ten years after RA diagnosis. I hope you can discuss again very soon what options are there for you. Ask more about the specific med she has in mind. There should be patient literature/booklets in the rheumatology waiting area or you can request them or look on the NRAS pages.
I was very, very reluctant to accept biologics, but as my consultant said .. We’ve been tinkering round with a little pistol and now need to go in with a blunderbuss! I was offered a choice of three and told to go off and read the literature and watch the DVDs on the medications they gave me and get back in a week to my rheumy nurse. I did just that, but often due to comorbidities or other health issues, patients may be restricted to what they are offered. I have allergies too and some general meds are not suitable so understand you and I have lactose free everything wherever possible as I’m sensitive, but not allergic to lactose.
I’m sorry the person you saw wasn’t more forthcoming on why she had a particular med in mind and I am a researcher (a lot of studying has made me that way!) and would never accept anything without going away and finding out myself. It’s maybe worth a little note to take in with what you want to ask so you don’t forget! It’s easily done. Good luck.
You sound like a person after my own heart - knowledge is power and the more you read and learn the less chance you have of being given something that you really dont want to take plus a good understanding of what your body is doing and why is a must in my book.
Cannot believe you were given DVD's and told to go away and research all the different meds - I was told nothing and nothing was explain to me - what a difference, if fact I was made to feel a nuisance.
Will have a good read of all the answers to my question from all the kind people on here when I get home tonight as I am at work at the moment.
You’re welcome dear Moggie and it’s a very scary time which some non RA people may not realise or even some who have it forget when they are doing well. I’m steady indeed at the mo but have had three massive blips since 1995 when diagnosed. I felt scared and apprehensive with each new med .. it’s natural. You have to talk yourself into it a lot of the time. For biologics I hesitated at first, but I was so immobile I said yes when I was staggering between two walking sticks, no one wants to be that stubborn and I said .. I’ll do it. I also phoned the NRAS helpline and voiced my concerns and they were amazing and chatted and helped so much. That was invaluable.
I cannot thank my team enough for giving me the choice of three biologic anti TNFs and giving me such a good range of literature and half an hour with the biologics nurse specialist to go through what they were briefly then another hour to discuss my chosen one, a week later. I know not everyone is afforded this time but it’s the way they worked then.
As I said there should be literature available if you ask as they may have removed all paper leaflets from the waiting area. I believe you can download PDFs of info on all the meds on NRAS website too.
Thank you very much for taking the time and trouble to write such detailed replies to me.
Its people like you that make these sites so successful, especially when someone is new to this illness and struggling to get correct or relivant information.
You're right, it's the only way. Just read that scientists have said it's mutated into two strains, one which appears to be far more aggressive, which may mean it could hinder attempts to develop a vaccine. Oy vey. 🤦♀️
Hi Moggie, I have hypothyroidism and when the joyous news of having what was diagnosed as either palindromic or RA (seronegative) as well came along, I was very reluctant to try any immune modifying drugs too. I started off on steroids just for flares, but eventually had to bite the bullet and move onto first hydroxychloroquine and then also methotrexate. I was really, really not keen on taking either - especially not methotrexate - as, like you, the idea of taking something that would 'squash' my immune system made me petrified.
You know what though, it is absolutely the best thing I could have done. I have gone from being in real agony, struggling to walk some days, other days literally unable to hold a fork and eat, to being able to garden still, to cook, to work, to carry heavy shopping - virtually like I was before. In fact - and this is the thing I wanted to emphasise to you - my only regret is that because it took so long for me to get a diagnosis (well over a year) and be able to start taking these seemingly scary drugs that I have a bit of joint damage and it is that damage that has stopped me from being able to do all the things I like as much as I used to. I have totally changed my view on it to be honest: I think nowadays Rheumatologists will advise early treatment to stop damage - the thing is, your joints can be being hurt and you won't know it until it's happened. The sooner you get treated, the better, in my opinion.
Anyhow, that is just my opinion and of course you will do what is best for you.
Good luck, hope you have a good registrar to talk to (the first registrar I saw was so helpful and is now a full consultant). (PS I take Quinoric brand hydroxychloroquine which Nomoreheels mentioned, and have had no side effects.)
Thank you so much for your lovely reply. I really need to see a different consultant as the one I had was unable to answer any of my questions and left me feeling very frustrated. You can be the best doctor in the word but if you cannot communicate with your patients then it is a waste of your talent.
Unfortunately I am at work at the moment and cannot read or comment on the many answers to my questions but will do so as quickly as I can as I would hate for people to think I am not grateful for their imput.
It depends how bad your PA is, really. My RA began with PA symptoms and I either took nothing or Hydroxychloroquine for about 10 years. I did. ok, I had flares, I had pain and often only took Ibuprofen or paracetamol when needed. It didn't seriously impact my life back then. I was and have been vegetarian and always followed a very healthy diet, and always have been fairly active.
Now, I do need immunosuppressive treatment. RA developed and I am strong zero-positive (off the scale strong). I resisted for as long as I could.
The thing is that I don't regret my choices because at the time I managed. The rheumy team like to get you suppressed asap to prevent joint damage. I don't have any yet... maybe I never will.
So, I think you must always decide what is right for you after listening to advice and doing as much research as you can. I still spend a lot of time reading the latest developments and revisiting older medical papers.
Thank you for sharing your story with me as it has resinated with how I am, and how I feel, at the moment. I have some pain im my hands that is not too bad, I have quite bad pain in one knee, but that hasn't bothered me for weeks now, but it's the pain in one of my feet that is driving me mad at the moment.
I dont want to go down the medication route too early but know I will end up there some time in the future. I am not stupid and will not suffer bad pain when I dont have to but I dont want to jump the gun and take medication that I dont need at the moment. It would have been a real help to me if I had had a medic who knew how to communicate as she was a very shy , quite person who was unable, or unwilling, to comment on remarks I made regarding my painful episodes.
I take levothyroxine also with methotrexate an immune suppressant. Humira is an option but I decided not to take it due to risks. I just saw a commercial about some new drug similar to Humira. We all have to weigh pros and cons. I do okay on methotrexate.
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Oh I was so dreading appointment 🤷♀️
My wife was recently diagnosed with RA
Is this a hoax?
