Is it safe to come off Methetrexate and tnf together...

[gallini]

i want to try alternative meds, i have been reading about serraptese, which fights inflammation, and lots of other problems we may have in our body. I do want to try this with omega 3. but i want to stop taking my methetrexate, and tnf. Has anyone tried coming off the meds, to try alternative medicine, and do you think it will have any effect on my bod????

[Gina_K]

Hi Gallini,

Funnily enough just last night I was reading the members stories on NRAS site and there was a woman there who had come off her meds and seemed ok, worth a look,

Personally, If you have a positive factor for RA in your blood or have been diagnosed by a Rheumatologist as having RA, I think its a big risk. I do think that complimentary therapies are often of great help. ie to give up red meat, and avoid acidity etc.

I would'nt do it. Why are you considering it? Are you not getting a good result with the anti tnf? How is your blood work?

Regards, Gina.

[gallini in reply to Gina_K]

Hello Gina, thanks for your reply. i will have a read on the members stories. I got diagnosed 3 years ago, iam seronegative tested. But my bloods are crp was 49 2 weeks ago and ESR, was 56. they are up and down, my consultant says the meds arnt working, i have my review in october, as i have been on humaira 3 months with not much improvement. My doc isnt going to recommend the serrepeptase,, so i think its my body, i just want to see if it works, i do understand its a risk, but if i dont try it, i will never know. The next drug was i think its called riximab, a drip once a month, which i hear can have more side effects, i dont like pumping all these drugs into my body. so think i will give it a go.

Julie

[Gina_K]

Gosh that is a poor result from Humira it took about 6 months before I got full effect, I also take 20mg mtx and plaquinil and was on steroids for 2 years.

Some people suit one aanti tnf and not another, maybe try the riximab and then try natural remedies?

As you say it is your body and you know it best.

Good Luck, whatever you decide, let us know wj=hat happens, am sure we would all love to know. I am afraid for you that you could get a flare, but sure with your bloods like that you are probably v sore anyway, the Humira got mine into normal range for the moment.

Regards, gina.

[Hidden]

I would seek medical advice to be sure x

[Hidden]

HI Gallini, I know it's a personal choice whether or not you go for alternative medicine, but you have to remember you have a disease, an auto immune one at that.

Personally I would never risk it as untreated RA can have a terrible impact on our joints, causing irreversible joint damage.

It is of course your choice, but if you haven't seen any improvement with treatment yet then this to me says your RA is aggressive and hard to control.

If you do decide on coming off all your RA medication then don't forget any damage done to your joints is like I said irreversible, and can only be helped by surgery.

i wish you luck in whatever you decide.

take care

mand xx

[Hidden]

Hi Gallini

I'm one of those who decided to ditch the meds and go it alone on alternative stuff!

I got so sick and tired of all the side effects, liver problems etc and never feeling in control, I stopped everything to give my body a rest. Mistake -BIG mistake! Within about 3 months I was in absolute agony - couldn't move and was stuck in bed.

Please, please reconsider. RA is a progressive disease, and the meds slow the progression down. As Mand has said, any damage done to your joints is irreversible and can only be helped by surgery.

It took my last GP six years to diagnose me (but that's another story) and when I finally decided I wanted a second opinion my knees and right hip were damaged to such an extent I couldn't walk. I had to have them replaced. My other hip is far from good, so I think that will have to be replaced in the not too distant future. I am saying this so that you will see how much damage untreated RA can do.

I have several friends who are on Ritux infusions and it has totally changed their lives.

Take care - Jean

[Hidden]

Hi gallani,

I was in my ra group Thursday when one off the other ladies started to talk about diet and ra and how different foods triggered her ra, the consultant looked as if he was going to fit lol but rightly so as he told the lady there was no medical proof off food helping so he didn't want the rest off us dragged into believing it.

I see it as why would so much be spent on these drugs to help us if it was as simple as changing diet or adding a supplement to help.

I know there are many alternative methods out there but personally I feel most are snake oils and old wifes tales don't want to upset anyone like I say this is how I feel personally.

I like jean spent many years being misdiagnosed so damage was already done, also like you my anti tnf has not been making much off an improvement however to me its much better than I was (unable to lift my head off a pillow) so while I don't have enough medical improvement to stay on my anti tnfknow like you I will be offered another so even though the side effects are scarey as hell they are nothing compared to the outcome off further disabilities this horrid disease/illness can cause.

so like jean says please please reconsider.

take care

Julie x

[annie64 in reply to Hidden]

Theres a book called the china study which is really interesting about nutrition and disease. Its worth reading and they have just brought out a film called forks over knives which i might get too. The diet thing is very personal but so simple really - and if it does help what has any of us got to lose. The only thing is - taking control of your diet is not as easy as taking medication - if it was there would not be all the obese people around that there are. Its very difficult doing a strict clinical trial on diet and i dont actually believe there has been one specifically for RA. The medical profession treat the symtoms/effects of disease traditionally but the cause is still unknown really in many cases. Sometimes the simple things are the best and how simple it is to change what you eat and drink.

My own view is to keep taking the medication but also help yourself with diet too -as it wont cure your RA but it can help with weight/energy levels and all sorts of things that support you with your RA anyway.

Take care

[Hidden]

Hi,

I hadn't heard of serrapeptase so I looked it up. There doesn't seem to be any scientific evidence to support it, BUT... it warns about using it alongside basic painkillers like ibuprofen and NSAIDs like diclofenac. It can affect blood clotting ability.

I think you would be taking a huge risk, but I do understand your frustration with your meds. I get fed up with side effects. But at the end of the day I have to put my trust in scientifically tested drugs rather than what some people might call "snake oil".

Good luck, whatever you choose to do!

[Hidden]

Yes phoebe wise advise. with that info I hoping people can make an informed choice.. some supplements/ herbal remedies can interfere badly with prescribed medicenes.. st johns wort is a problem with certain medications too and there are others too!

I take omega 3 and starflower( borage) which both have some clinical evidence but again its purely my personal choice ! I take prescribed painkillers and my Ra treatment is gold salts by intramuscular injection...

be aware though that star flower (borage oil) and its relation evening primrose oil are contra- indicated in epilepsy sufferers..

my advice is that people should make informed choices .. I Wouldnt personally advocate giving up ra meds unless your rheum teams recommends it!

[annie64]

Im only on tnf because i refused to go back on methotrexate because it didn't help me at all and made me feel so ill. I know i keep harping on about it but have a look at diet because it has helped me massively. It isn't easy but life isn't when you live with RA. All these people who say there are no clinical trials that show diet helps cannot say that it does not help either as i don't believe there has been a strict trial for the diet i try to follow. - mainly wholefood, no meat or dairy.

I also think you should be really careful about coming off medication as the pain and miserable existence when RA is at its worse is unbearable and damage irreversible. Take care

Annie

[Victoria-NRAS Partner Moderator NRAS]

Hi all

Obviously it is a very personal decision whether you come off of medication. As others have said, there isn't the same level of evidence sadly for complementary therapies as there is for standard treatments, so unfortunately at this stage, nothing is proven to slow down the progression of the disease in the way the medication has (you will see that we have a disclaimer at the top of the aforementioned case study, explaining this).

I think that a lot of people have posted some very good replies on this thread, explaining from personal and learnt experience about the concerns with the non-medical route, so I won't go into any greater detail, but you can of course call the helpline (0800 298 7650) if you want to discuss this further. However, I just wanted to make a point about diet, as I can see that some of this thread seems to be implying that it does nothing for RA.

For some people, dietary changes would not greatly effect their RA, and the standard advice would be just to have a healthy, balanced diet (and keeping weight at a good level, so that you are not putting too much strain on the joints). However, some people do find that certain foods can make their condition flare up, and that cutting these foods out of their diet (which foods they are will vary from person to person) can help. Diet is not onsidered an adequate replacement for medication, but changes to diet can improve the symptoms of RA. If you are concerned that some foods might be triggering a worsening of your RA symptoms, you could experiment with keeping a food diary for a while, where you monitor what you are eating and how you feel each day. You can read more about diet on the NRAS website:

nras.org.uk/about_rheumatoi...

There is also good information on the ARUK website:

arthritisresearchuk.org/art...

I hope this helps!

Victoria