Go without meds for RA?

applerose

I haven't been too bad since being diagnosed a couple of years ago. My rheumie said recently I could go without meds if I wanted to but suggested I try Leflunomide or Methotrexate. Have any of you decided not to take any meds for RA? If so, do you regret not trying them? I'm worried about the side effects and my daughter has told me she would worry if I did take them. Can't decide what to do.
Has anyone found anything more natural has helped? Losing weight? (I'm about a stone and a half overweight), diet (I always ate healthily but not I can't run, I have been eating too much fat and sugar). My rheumie said food and drink has no effect.

salamander

I rang NRAS helpline when I was trying to decide what to do about meds. They are extremely knowledgeable and helpful.

applerose

Thank you Salamander. I'll give them a ring.

elnafinn

You could have a chat with the helpline here too if you wish. From what I remember reading on the forum, people have tried to go without meds but it has not lasted. Others continue with meds but also try to lose weight if necessary and change their eating habits at the same time.

Your daughter has confided in you that she would worry if you took any meds for your RA and that is very sweet of her but it is you, after all, who have to live with the RA, not her. If you did decide to start on one of the meds I am sure she would understand.

I wish you well, whichever route you decide to take.

Elna x

dreamdaisy

Are you currently taking any meds? If so, that could be the reason why things are not too bad. I didn't take any meds for seven years, not because I chose to but because I went un-diagnosed for that length of time. I am 100% certain that I would not be in the pickle I am now if some doc somewhere had actually recalled something from their half a morning on inflammatory diseases in the second year of medical school! The meds control the immune system to stop the RA flaring, take those away and that will give your immune system free reign which may not be that good an idea. It is a matter of personal choice however, and if you want to give it a whirl then why not? It may turn out OK but if not you can always resume the meds. I lost a shed load of weight, and currently am trying to do the same again and I can truthfully say that has made no difference whatsoever to the pain levels. As for exercise etc I do find that difficult but walking is now easier thanks to my rollator, so I must make the effort to go out with that once a day. I do not have much in the way of side effects from the meth, humira and sulph that I take and I guess they are doing something for the PsA as my blood results are good but, tempting though it is to drop them, I know I would be a damn site worse off. I wish you well. DD

stickywicket

The thing about RA is that it can go into remission and we then start to make plans based on things remaining like that. I guess they could but it's most unlikely.

I don't know what meds you're currently on, applerose, but it sounds like you're not taking any DMARDS. If it's only anti-inflammatories, you could try cutting back or even doing without them, if your rheumatologist is OK with that. However, it probably will come back later if not sooner.

Fear of the meds is common and I'd be lying if I said I didn't experience it when going on something new and powerful. But you have to remember that this is a powerful disease. The DMARDS do hold it back and help to prevent any deformity. I've been on meth for over 10 years now with no problems despite surgery.

If you're overweight then losing some will help and a healthy diet will too. Gentle exercise will help the muscles stay strong. I'm sure your daughter wants the best for you but, if I listened to one of my sons, I'd probably drop everything and overdose on vitamin C :roll: It's your call.
I'd want to ask my rheumatologist why (s)he wants to put me on meth or lef and how high a dose.

julie47

Hi applerose
I am on both meth and leflunomide and have been for many many years.
I once had to come off the meth for a couple of weeks as a result of a blood test,(years ago) but that soon rectified its self. At first I did notice a few hairs on my pillow i the morning with the meth when i first started taking it but that also soon stopped.
To be perfectly honest these two meds combined have been good for me, along with anti inflammatory meds.

I wish you luck with your decision.

Juliepf x

applerose

Thank you so much for all of your replies and well wishes. I am not on any meds at the moment apart from paracetamol when the pain gets worse, maybe for a week every few months.

My daughter would understand. She's the manager of a lab, testing all sorts of human samples so she's always researching on diseases but I don't think she understands what it feels like to live with it. I suppose I'm like any mother. I don't want my kids to worry about me.

I have researched my rheumatologist and he has done quite a bit of research on RA so maybe I should put more trust in him.

dreamdaisy

You do sound as though you are doing remarkably well so why rock a steady boat? Listen to your rheumatologist and maybe take his advice, but if you are feeling as well as you apparently are then maybe it isn't time to start any thing. As usual it's the age-old problem of we are all different in how we are and in how we react, but you do seem to be on a good streak at the moment! Enjoy it, yes? DD

lindalegs

Hi Applerose,

I've been on Dmards for many years. One Rhuemy decided that my RA had burnt itself out and weaned me off them just leaving me on a daily anti-inflammatory and then discharged me from his care.

Over a few years my RA crept back getting increasingly worse and I just soldered on thinking it was a bad spell which would pass. It didn't. I ended up in hospital for four days with a flare and my current Rheumy said I'd done more damage to my body with not taking any Dmards or seeking help sooner.

I don't say this to scare you because my RA is very aggressive and we're all different. I just think you should consider taking a Dmard if your Rheumy is advising it as he's looking at the bigger picture.

Hope this helps.

Luv,

amboritic

I had a virus a few months ago so stopped thw methotrexate to allow my body a chamce to fight it without being compromised.

I bought several herbal anti inflammatories from Holland & Barrett and just used them for about 3 weeks. I decided to do my blood tests 3 weeks apart rather than 4 to see if my esr or crp levels spiked or stayed normal.

The result was my inflammatory markers remained pretty much constant.

I would not.advise doing this and only.do what your dr says to do.

But I thought it was an interesting little experiment.

I just took the opportunity presented by my virus.

Must admit I did feel a lot better off the meth also.

I have continued with the herbal stuff aswell.

I think RA is all about.ways to manage your health and doing what makes you feel better.

Though I had a work colleague that no longer took any meds other than diclofenac so I think if your RA is in remmission then I think it is reasonable for you dr to want to stop the DMARDs for a period of time. Then restart if your markers showed increased inflammation.

stickywicket

amboritic wrote:

I had a virus a few months ago so stopped thw methotrexate to allow my body a chamce to fight it without being compromised.

I bought several herbal anti inflammatories from Holland & Barrett and just used them for about 3 weeks. I decided to do my blood tests 3 weeks apart rather than 4 to see if my esr or crp levels spiked or stayed normal.

The result was my inflammatory markers remained pretty much constant.

If you were only off the meth for 3 weeks, amboritic, it might well not have registered in the blood tests. It takes several weeks to build up in the system and, in my experience, also takes several weeks to get out of it.

Just a word of caution. You should make sure your rheumatologist knows if you're taking herbal supplements and your GP too if you take other meds.

salamander

stickywicket wrote:

amboritic wrote:

I had a virus a few months ago so stopped thw methotrexate to allow my body a chamce to fight it without being compromised.

I bought several herbal anti inflammatories from Holland & Barrett and just used them for about 3 weeks. I decided to do my blood tests 3 weeks apart rather than 4 to see if my esr or crp levels spiked or stayed normal.

The result was my inflammatory markers remained pretty much constant.

If you were only off the meth for 3 weeks, amboritic, it might well not have registered in the blood tests. It takes several weeks to build up in the system and, in my experience, also takes several weeks to get out of it.

Just a word of caution. You should make sure your rheumatologist knows if you're taking herbal supplements and your GP too if you take other meds.

I was told no supplements at all by mouth, not even over the counter meds and particularly not Echinacea with Mtx. Only topical ointments and creams only.

applerose

Thanks everyone. At the moment, it feels a bit 6 and 2 3s - taking meds or risking it getting much worse in the years to come. I am thinking of the injected meth so, hopefully, preventing it from worsening.