Sick with the drugs

[Vonnie10]

Hi, my dilemma is just diagnosed with RA , I was ill with the metho and hydro, been offered sulpha . I'm reluctant to take the sulpha , any ideas on the next step or even a natural step would be great ?

Thankyou in advance

[helixhelix]

It is really a bit of trial and error with the drugs, as you can have bad reactions to some and be perfectly fine with another. So just because 2 haven't worked doesn't mean you'll have trouble with them all.

As far as other approaches go, it really depends on how aggressive your RA is, and how much risk you are prepared to take of permanent joint damage. It may well be that you are one of the lucky ones with a mild RA that responds well to lifestyle changes, diet, exercise, sleep and de-stressing. But you could also have an RA that is more aggressive and won't get controlled unless you thwack it with drugs. And it can cause all sorts of damage quite silently. People diagnosed pre-1970's would be so envious of the choice of drugs we now have available.

Can you discuss with your rheumy as to whether he or she thinks you have some time to try other approaches? It is really best to have your rheumy on board if usually want to try non-chemical methods.

If so, there are lots of post on her about dietary changes my so on if you have the willpower.

[Vonnie10 in reply to helixhelix]

10 weeks in pain stiffeners in my hands was unreal is that mild or aggressive I'm just newly diagnosed ? And 1 night I literally wanted to chop my arm of ?

[farm123]

I was very intolerant of the DMARD group of medicines but have done very well on the Anti-TNF's or biological group. Unfortunately mainly due to the cost there is a protocol to follow before being prescribed bio's and this varies by areas. Cannot remember the full criteria but if you have a look at the NRAS website there is further drug information on there. A lot of people are looking into natural steps but be aware that the damage from RD in the joints is hidden and irreversible and there are many variations of this disease and everybody is affected differently. Farm

[Vonnie10 in reply to farm123]

I think it's if you intolerant to 2 they go down th I I route , I had a quick look at the criteria

[pippin_fort]

I too was very sick with methotrexate but have been fine on sulfa. I was only slightly sick with it to start with but my body quickly adapted and it has made a huge positive difference to my quality of life. There are also a lot of people out the waiting to take our money on the natural side of things and no demonstrable evidence that that approach works either. I would suggest that you try sulfa. and go down the natural route on your own at the same time. You have nothing to lose and everything to gain and as others have said joint damage is irreversible. Take care.

[Vonnie10 in reply to pippin_fort]

I won't let anyone take my money I work so hard for it,

[lornaisobel]

metho taken by injection tends to be better tolerated -

[Vonnie10 in reply to lornaisobel]

Isn't it the same im and tablet same drug same reaction ?

[helixhelix in reply to Vonnie10]

Strangely not. Because sub-cut bypasses the stomach you get less/no nausea and also absorb all the drug so it can be more effective at lower doses. On tablets I also had horrendous mouth ulcers. 2 weeks after starting injections they disappeared.

[Vonnie10]

Thanks, hopefully I'm in the mild bracket, hate the fact of taking strong drugs, who knows what's that's doing to me as well , I'm going to hold of for now on any drugs just to see how it goes. I may never get joint damage, we are all different and they don't have a crystal ball do they, we shall see, the thought of liver biopsy and so on scare the life out of me plus my immune system. Will give it a width birth.

[Simba1992 in reply to Vonnie10]

If you go off drugs you can always try to support your body with nontoxic treatments. The Auto immune paleo diet has proven to decrease inflammation to a significant amount in 70% of RA patients. It made a big difference for me and so many others. Just dropping all meds without an alternative treatment plan may not be such a good idea. You could also look into antibiotic treatment with minocycline. The Roadback Foundation has a lot of info on this treatment that has good results and is far less toxic than RA meds.

[helixhelix]

It's your choice, no one can force you to take things you don't want to. However do talk to your rheumy as he/she might be able to give you a better idea of prognosis and help you make your decision. Mild RA is a strange beast as doesn't necessarily relate to the degree of pain you are in, but it's speed of progression and how erosive it is, and how it is affecting your other organs.

Also do bear in mind that there's a fair bit of research that shows that treating early RA very hard (ie with drugs) is likely to have the best outcome. They are many people who have shared their story on here who have taken drugs at the start alongside lifestyle changes, and then slowly been able to wean off drugs and manage just with diet and exercise. So do take time to think about it all. Good luck.

[Hidden]

Hi Yvonne1010, heavy doses of Tumeric, a natural ingredient found in the pepper from which they make Curry Powder, does a lot for RA. My husband never took any of the hospital drugs, (it didn't half freak them out when he refused and they even said he might get an inflamed heart and die, to frighten him into taking them, but he still wouldn't,) just the Tumeric, and his RA tests are negative now. If you look up "Tumeric for RA" on Google, it will tell you where to buy the powder and how to mix it with coconut oil.

[attatel in reply to Hidden]

What dosage of turmeric does your husband take, scruffyrabbit?

I take two 400mg capsules a day as well as my mtx but I've never been sure what the best dosage is for RA

[Mandalou]

Do the Rheumatologists still see your husband every few months scruffyrabbit?

When you say his tests for RA are all negative are you talking about recent X-rays compared to his baseline screening?

It's not that I'm against the anti inflammatory properties of Turmeric but I would be extremely nervous about being in remission as your husband obviously is but then being out of a Consultant or specialists care.

Does your GP test your husbands ESR regularly and C reactive protein levels?

I'm just interested at how supportive traditional practioners are if you decide to take a more natural route.

M

[Ali_H]

Hi Yvonne,

Before going med free I would ask for X-rays of hands and feet if they did not happen at diagnosis stage as the X-rays will give a baseline of what (if any ) damage has already take place. That way you can make a more informed decision on where you want to go.

Meds can be tricky Devils as they don't work over night and they take some getting used to - but if you need them then there probably is one out there for you if you've the resilience to keep going.

The natural diet route for sure is a darn good support for keeping things steady for some of us but not others so it might be worth persuing 'cleaning up' your diet whilst also continuing exploring the med route.

Where to start cost free on diet? Common sense really - drink plenty of water, eat fresh and raw where possible. Avoid/reduce gluten and dairy intake. Refined sugars are obviously just plain white poison (with or without RA they are damaging and nutritionally empty...but still I reach for them if I don't watch myself!!). For me potatoes and tomatoes tend to nudge me towards achiness if too many eaten. Turmeric works best mixed with some black pepper as they bounce of each other in a positive way - soups and salad dressings are the obvious place to add them as well as a supplement if you want.

Keeping moving is important... Just gentle range of movement exercises are all that can be done some days but gritting your teeth and doing them will help in the long run. Play dough is great for hands - you can mix in a little peppermint or Rosemary oil ( in fact any oil) if you want - roll it around/ kneed it on a board whilst watching telly or sat in the garden watching the world ticking by helps.

Warm scented baths and gentle hugs are also recommended along with the occasional belly laugh😎

Well that was a longer ramble that I had planned... I hope some of it was of use - it has certainly reminded me to get back into the healthy eating habit as I've let things slip a bit lately!

All the best

Ali

[Amy_Lee]

Ali_H, agree with you fully. RA is not a simple sickness but it is a chronic disease therefore we should be careful.