Been diagnosed with RA for about 8 years now been pre... - NRAS

NRAS

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Been diagnosed with RA for about 8 years now been prescribed Methotrexate as well as hydroxychloriquine and sulfasalazine. Very worried!

Lex54 profile image
38 Replies

I am struggling to accept triple therapy. Really worried about causing more damage to my body with secondary side effects. I am sore all the time but take pain relief and ibuprofen with hydroxychloriquine and sulfasalazine which helps me manage.

Managed so far with flare ups probably 6 monthly and Steroid injections which help well. Feel it's my fault as not managed to exercise recently and had lots of stress.

I'm quite active usually and work full time and worried I have to retire.

Has anyone else had the same dilemma.

38 Replies
Celticdancer profile image
Celticdancer

Do as much research as possible on these medications and their side effects. Read peer reviewed medical papers and journals like the lancet, british medical journal etc as they can be accessed online and they`re not just for medical professionals to read, anyone is entitled to read them. They might have medical jargon but you can understand majority of the information if you have enough common sense.

Alot of people on these health websites including this one have people hanging on every word of their health professionals and taking what they say as gospel. Some doctors, nurses etc don`t have a clue what they`re saying or doing. I know, I`ve worked alongside them and seen when they screw up. I`m a patient and my doctor is only good enough for signing forms. Might switch to another doctor when she gets too much on my nerves. Some doctors and nurses are good but I`ve noticed they`re leaving the NHS in droves and only the dregs are left.

Don`t be afraid to question everything and please stick up for yourself at all times. If something doesn`t feel right then it often isn`t. Follow your gut. If these medications are not working for you then speak up. Find alternatives. Be prepared with questions to ask your health professionals. Whatever you do though, don`t blindly trust anyone as doctors are not gods and sometimes they don`t know as much as what you think they should know.

Hopeful1 profile image
Hopeful1

Hi Lex54

Reaching out as I was in same boat. They did not start me on Metho as I have lung problem. But as Sulph and Hydroxy did not damp RA down enough we decided to give Metho a trial. So glad I did! Been in remission for several years since starting it pain free,no flares and no side effects.

If you do decide to try Metho you are monitered very carefully. It takes some weeks to work. And if Metho proved not to work for you there are other alternatives.

Many people find fatigue a constant but learning to adapt to that is part of the RA journey.

Are you in touch with N R A S? So many helpful leaflets re drugs fatigue work etc and a great help line.

Can I ask how long you have been diagnosed? Sadly stress is not good for RA but getting pain free helps everything. Do not beat yourself up over excercise you are battling on enough fronts.

Do hope things get better for you.

Lex54 profile image
Lex54 in reply to Hopeful1

Hi I've been diagnosed for about 8 years after some severe infections and surgery which triggered my immune system. I'm reasonably well and have been lucky so far ! Sometimes struggle to keep up the pace but suppose 64 isn't that young. Keeping my finger crossed that it doesn't bother me too much and if unwell I will stop it. Thank you!

Silverpixie profile image
Silverpixie

Sounds as if it's time to consider biologics?

CripLady profile image
CripLady

I have been on Methotrexate and Sulfasalazine for 12 years. They work for me, though took a while to kick in as I had rapid onset everywhere and couldn’t move or anything 🥺.

Agree with Hopeful1, being stress free has made a world of difference. Sorting out money (benefits and pensions), home (moved to be near family) work (medical retirement) and not beating myself up every day (counselling helped) made a whole world of difference. I also stopped eating gluten (cheat occasionally).

Information will help. Read all the NRAS leaflets on medications etc. Also read verified medical research/ publications rather than ‘my friend x found miracle cure’. Good Luck x

Lex54 profile image
Lex54 in reply to CripLady

Thank you. The thing is I don't want to retire for a few years so hopefully will be ok in this as well. Going to speak with a nutritionist to see if helps as well. Stay well and thanks again.

CripLady profile image
CripLady in reply to Lex54

No need to retire if you are well enough to continue. I would look at cutting your hours / days though if that would help. Everyone is different. Do what’s best for you x

Fra22-57 profile image
Fra22-57

I had to come off methotrexate as it was damaging my liver.I am on sulfasalazine,prednisolone,hydroxychloriquine,pregabalin plus Abatacept biologic injection.I am just waiting to have my 3monthly blood’s tomorrow then I will contact my rheumatologist as I am struggling with so much pain in my joints etc.I think the biologic has stopped working.If you are in pain do contact yours and ask questions.this is my 4th biologic as other 3 didn’t even start to work.I had to request to be seen at Guys hospital by another rheumatologist who strongly advised mine to put me on the 4th.don’t give up.It’s your body and you must ask for more or change the mix

Lex54 profile image
Lex54 in reply to Fra22-57

Thank you . That's part of what I'm worried about, long term effects of all these drugs 🥺Hopefully if I have a low dose it will work but if not or unwell I'll stop . My joints are worse somedays and bearable with pain relief others. Definitely getting worse though so I suppose I should try !

Fra22-57 profile image
Fra22-57 in reply to Lex54

yes to be honest when in pain I would accept anything to be able to do things again etc.Plus condition will get worse if not treated.wish I had been told about side effects of couple of my drugs thou.Google is great but can scare you😆

Lex54 profile image
Lex54 in reply to Fra22-57

thank you

medway-lady profile image
medway-lady

I'm not certain b ut believe that MTX must be tried before anything else is prescribed. I was changed from MTX to LEF which was great for many years now its AZA plus a biologic and in remission. In my view the risk of damage to your health of not taking another medication has to be taken into account and it then becomes risk v benefit and painkillers are not a good long term solution as they don't stop the ever increasing damage to your joints and could be actually making things worse.

AgedCrone profile image
AgedCrone in reply to medway-lady

You are right…Nice states you have to have failed on either 2 or 3 Dmards, depending on the HA regulations …one if which must be Methotrexate …before the treating consultant can apply for funding for Biologics.

I do wish more people would declare they are doing very well on Methotrexate ….& also explain it can take at least 12/15 weeks to fully take effect.

Like so many, I had 7 painfree years on Mtx…..swallowed it like Smarties with only the odd occasional headache ….which in fact could have been “just a headache” & nothing to do with Mtx.

Lex54 profile image
Lex54 in reply to AgedCrone

Thank you for your reply. I'm just a bit nervous about this drug 🤞I don't have problems with it.

bienassis profile image
bienassis in reply to AgedCrone

Just browsing through this thread while waiting for a phone call from my GP, and I would just like to add my voice to those who are taking MTX and find it works so well.

An article I read some while ago by a consultant rheumatologist advised patients not to be fearful of MTX and gave a very good account of the drug - which at that time was relatively new. I started taking it in 1998. I asked no questions about it; just got on with it. It was a smooth changeover from Azathioprine, stopped because of a small skin cancer, and I was perfectly relaxed and did not expect any problems. For 20 years I was in remission, only adding a biologic in 2020 (now stopped). I still take 10mg weekly.

How I wish MTX was around when I was diagnosed in 1967! I almost certainly wouldn't have the amount of damage that was done during the early years.

I wonder sometimes if my total lack of stress and worry about the drug helped me accommodate it. That lack of stress and worry came, it has to be said from ignorance. Nobody can be totally ignorant today with so much information at their finger tips. Obviously, this is not an argument for ignorance, knowledge is always desirable. But perhaps better communication is needed and more knowledge, since a little knowledge is a dangerous thing.

bienassis

AgedCrone profile image
AgedCrone in reply to bienassis

I think reading personal reactions to any drug & stressing it’s not for you makes no sense. When first diagnosed with RA I certainly think not reading Dr Google, is the way to go. Even listening to those a drug has been successful for……doesn’t guarantee it will help anyone else.

Infact Mtx was licensed as a cancer treatment back in the early 1950’s & for RA not that long after. So many people write in to this site asking advice on taking Methotrexate….because they have been influenced by reading of bad experiences, & sadly it seems it is always those it hasn’t helped overnight who reply, & if that is the first thing a newly diagnosed person reads about it….it’s only natural they feel like running a mile.

Thankfully I struck really lucky with my first rheumatologist, & when prescribed Mtx I had no preconceived ideas….& I was one of the lucky ones it suited. But sadly only for 7 years…but they were really good years….so I embarked on a Biologic with the same attitude…& was lucky again.

Tbh..Suck it & See…is as good a way as any to try a newly prescribed drug. Nope….doesn’t sound very scientific….but then neither does comparing oneself to a complete stranger’s reaction…..at least the doctor who prescribes a drug has some knowledge & some experience which drug will suit which patient……but is not always 100% right either.

Thankfully these days most people do find a drug that suits them… ...within a reasonable period of time…but it does take patience & perseverance.

Lex54 profile image
Lex54 in reply to AgedCrone

hi Thanks again for you advice. I started Max a week ago only in a small dose in addition to my other meds. I can tell you I have actually felt the benefits already and hope this last with no side effects as yet. Still to have my bloods done next weekend 🤞that's ok. Thank you again for your honest advice.

bienassis profile image
bienassis in reply to AgedCrone

Yes, AC, you have put it well. What I have noticed in many of the posts about MTX is, even if the drug is doing its business, there is a feeling of anxiety about taking it. This seems to come from listening to the experience of other sufferers, and, I suppose, hasn't been counteracted by the medics or any real understanding of the medicine. Anxiety can bring about stress, and that really needs to be avoided as stress can trigger flares.

I was told early on by a consultant that it could affect the liver - hence the regular liver function blood tests - but I was also told that should that happen I would "have a rest from the drug" and return to it when the liver recovered. The liver is quick to repair itself and the possible problem wasn't treated as a big drama. I can't remember ever being disturbed by that; I had total confidence in my team at UCH. I've only ever taken one biologic which I stopped earlier and am now just relying on the MTX.

Yes, it was developed as a cancer treatment - when I started the drug the doctor mentioned that. He also said it could protect from both breast and bowel cancer and it seems there is some evidence that sufferers from rheumatoid disease are less likely to be affected by those two diseases. In any case, it is a well-tested and trusted drug and I believe still the first recourse for treatment after diagnosis of RD.

In the "olden days" there were no computers and therefore no Dr Google - so no temptation to take on board poorly understood information. Perhaps there lies the reason for my generally relaxed attitude. Even now, I'm very wary of seeking advice about anything at all on-line.

Well, keep warm!

bienassis x

Lex54 profile image
Lex54 in reply to bienassis

Hi thank you. I have started a 10 mg dose alongside Hydroxychloriquine and Sulfasalazine as well as Folic Acid. I'm really surprised that I haven't had any side effects so far and already feel better. Thanks again 🤞my bloods are ok and continue to improve!

AgedCrone profile image
AgedCrone in reply to Lex54

I take my hat off to you if you can stomach Sulfasalazine…..I think that drug gave me some of the worst side effects of all the RA drugs I tried!But I read on here so many people find it really helps…..so there really is no easy way except to try until you find what suits you.

I hope you continue to do really well on Mtx.

bpeal1 profile image
bpeal1 in reply to AgedCrone

We’re all so different. Sulphasalazine was the first drug I tried and I’m still on it 15 years later. I’ve never had any side effects from it and now take 4 tablets twice a day (double the usual dose for RA - although not as much as can be prescribed for some other conditions).

bienassis profile image
bienassis in reply to Lex54

Well done, Lex 54! My bet is on the MTX! But as long as you are progressing well with a combination, that must be good news. My experience has always been on a single drug - not on combinations which I believe is the modern approach. I started with "gold" eventually progressing to azathioprine (10 years of remission), stopped because of a small skin cancer, then the methotrexate (20 years of remission). Added a biologic after a serious flare - a sorry experience, so dropped the biologic and now continuing on the MTX again in remission, but damage done in the first 20 years of the disease (1967 1988) is my true trouble now

So not a bad advert for those 2 DMARDs! Lucky? Of course, it plays a part.

I do hope you keep on an even keel - and, as others have pointed out, always bear in mind that stress and anxiety can do untold damage, so don't let the experience of other sufferers make you worry. We are all individuals and react differently.

Hope you are not snowed in! No sign here (South East) of a thaw although no more snow overnight.

bienassis x

Lex54 profile image
Lex54 in reply to bienassis

Thank you for your support. I'm still apprehensive but hopefully will continue to fry the benefit.

Were freezing but no snow yet due tomorrow 🥺.

Thank you

Lex54 profile image
Lex54 in reply to medway-lady

thanks yes I've been worried about the same.

helixhelix profile image
helixhelix

I was on that triple therapy with great success for 8 years. And in remission for most of that, without so much as cold.

When I moved to France my rheumatologist said that this “anglo-saxon cocktail” was not a common treatment, but was becomimg popular as research had shown it was as effective as a biologic. So they were happy to keep prescribing its for me,

Remember if you don’t like something you can always stop it.

Lex54 profile image
Lex54 in reply to helixhelix

Thank you ! I'm quite nervous about taking it but feel I should try. You were on it? Why did you stop it?

helixhelix profile image
helixhelix in reply to Lex54

i’ve not stopped Methotrexate, but have swapped the other two drugs for a biologic. I started to have flares, so now take a biologic as well as MTX. Which I consider to be my friend that has helped me so much.

I hesitated for a long time as was scared of biologics. I do find it strange that MTX is seen as a scary drug because of side effects like nausea, but biologics aren’t when their side effects can do a lot of harm. You can haave bad reactions to any drug, even simple things like paracetomol, so have to weight up how you personally feel.

bienassis profile image
bienassis in reply to helixhelix

So pleased, hh, that you are giving the thumbs-up for MTX - also scotching the "scary" reputation it has. As you point out, side-effects of other drugs can be far more serious without being labelled "scary".

I have every reason to be grateful to MTX, and like Aged-Crone, think those who have positive results from it should try to calm the fears of those who, for often minor reasons, are scared of it. At least, give it a bit of time.

Fear is infectious, and unfortunately spreads rapidly. As I have mentioned elsewhere MTX is very well-tested and also well trusted in the medical profession.

It has to be said, not everybody will benefit from it, but there are very good reasons why it is the first drug prescribed on diagnosis.

bienassis x

Madmusiclover profile image
Madmusiclover

there are many other drugs available for you to try. Do not suffer in silence. X

Lex54 profile image
Lex54 in reply to Madmusiclover

Thank you . I'm already on two 🙄

nomoreheels profile image
nomoreheels

Hiya Lex54, welcome. It's not an unusual protocol, triple therapy. Contrary to your line of thinking I’d hold with it being beneficial. Side effects aren't necessarily a given, or if you do have them they’re more likely to be common ones eased with accompanying folic acid. You probably know but MTX is the only DMARD which has the benefit of coprescribing folic acid at various dose depending on need.

There is also the consideration that should you need to progress to biologics then MTX has to have been tried, unless there is a specific reason not to. They are recommended only if intensive therapy with 2 or more conventional DMARDS haven’t controlled your RD well enough.

Do you think maybe it would help if you ask your Rheumy for his/her thinking behind adding MTX, that is if it wasn’t discussed? It could be he/she is considering reducing the doses of your existing HCQ & SSZ once you become better controlled, maybe even stop one of them. The thing is though you can't be as well controlled as you could be. You don't say what MTX dose you're starting on but I’d see how you do on tablets & if your concern about damage due to side effects does happen then you could ask to change to injections.

The ideal is remission, hopefully with the additional MTX you will see your 6 monthly flares be a thing of the past. Maybe even see if a more effective prescription NSAID would be better too.

I hope you'll find being here will help you & you'll be able to help others with your experiences soon.

Lex54 profile image
Lex54 in reply to nomoreheels

Thank you . I will give it a try . Just nervous and probably in denial! My Rheumatologist nurse explained that maybe if controlled then can try and reduce other medications. Here's hoping it benefits me. I'm worrying about getting worse and not being able to work as well. I'm in contact with lots of families and a bit worried about my immune system being more compromised. Just need to wear a mask 😷. Thanks for the advice.

nomoreheels profile image
nomoreheels in reply to Lex54

MTX was & still is a game changer for me, more so than the 3 other DMARDs tried with it. I've been on it 13 years at various doses, currently 17.5 mg injections & 5 mg folic acid 6 days. Thing is you’re worrying about being worse, try to turn it into a positive… adding MTX could be a game changer for you. All you can do is try, you never know you could be like many others have been & wonder why you were so concerned about starting it once you settle on it. If you don't then you've tried & that opens doors to biologics if thought the next best step, which to be honest can come with more serious potential side effects than MTX if you're unfortunate.

I'm sure you do all you can to protect yourself in your work environment. Unfortunately we can't control how others do. It doesn't necessarily mean you're at much greater risk, & you'll be up to date with the vaccines & boosters I would think especially with your job.

Lex54 profile image
Lex54 in reply to nomoreheels

Hi thank you for the advice . I understand what you're saying and have decided to try on a small dose 🤞

nomoreheels profile image
nomoreheels in reply to Lex54

Yes, fingers crossed 🤞Let us know how you get on once you've given it a little time. Don't forget to take the folic acid.

Mall profile image
Mall

Hi Lex

Sounds similar to how drugs were introduced to me over the first few years. The addition of methotrexate completely turned things around, it was life changing and helped me to continue working for many years and pursue my leisure activities. I have retired now 25+ years on and had changes in my drug regime over the years but methotrexate is still an important part of it along with a biologic. As the methotrexate was effective for me my rheumy stopped the hydroxy on my next visit. Methotrexate doesn’t suit everyone but I would recommend giving it a try as it can be so transformative for many like me. You will be monitored through blood tests and if you have an adverse reaction you can stop taking it.

Lex54 profile image
Lex54 in reply to Mall

Thank you for the advice and reassurance it is appreciated.

TheBoys profile image
TheBoys

am obviously not medically qualified but I wouldn’t take a collection of tabs. I’ve told my docs before.

Taking one set of tabs usually impacts elsewhere on life. Question it.

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