Head all over the place

tinydancer

Ive had "inflammatory" arthritis for about 3 years, been on Sulphasalazine for most of this time along with Diclofenic. Was at the rheumatologist today and its been confirmed I have rheumatoid arthritis. She wants to put me on Methotrexate too, told her I'll have a think about it, she was going on about side effects etc and couldn't take it all in.
:shock:

dreamdaisy

Hello tinydancer, it's nice to meet you and I am so sorry that you are having to deal with this - but glad that you have found us. I have been on injected meth for some while now (at least three years) and I can truthfully report that I am very rarely troubled by any side effects such as nausea or hair loss. I do occasionally feel very tired and yes, I feel 'better' in myself when I have to stop it for any reason but apart from that it's fine. We all react differently to these meds and whilst it's true that a few cannot get on with it at all it is also true that the majority of us manage with not too many problems. For a lucky few it makes all the difference to the quality of their life and I sincerely hope you will be in that camp. I began on sulph in 2002 and then other things were added in along the way, that seems to be par for the course. I was - and still am- carefully monitored and that is an important part of the whole malarkey. I wish you well and please don't googaskjeevesbing too much - talk to us as we know our stuff. I wish you well. DD

elnafinn

http://www.arthritiscare.org.uk/forums/living-with-arthritis-forum-f8/adding-methotrexate-so-scared-need-some-reassurance-t31483.html?hilit=methotrexate

Hi TD

Welcome to the forum. I found the above recent thread and thought it may help you.

Look after yourself, I am sure others will offer their advice and support shortly. I have OA but I wanted to post to support you. I can well understand that you are not keen to start on a new med but many on here find it a great help to them with their RA symptoms.

Chin up,

Elna x

AutoimmuneResearcher

Hi tinydancer

I read the same on so many forum posts and you are not alone - there is lots of good advice around.

I hope I am not being rude to ask you about the Sulphasalazine - did the doctor ever explain that it was also a drug for Crohns and Ulcerative Colitis. It primarily stops inflammation in the gut and does not go in to the blood stream.

http://en.wikipedia.org/wiki/Sulfasalazine

Has anyone ever discussed or considered a dietary approach to consider inflammation with you?

barbara12

Hi tinydancer
And a warm welcome to the forum, it is totally understandable what you are going through, changing you you diagnoses like that must have come has a shock, there are so many forms of Arthur...and sometimes it does take quite a while to get there.
Sorry I cant help with your meds but I am sure others will be along later.
And dont forget you have us lot to support you now, and if you need to have a long rant we are here to listen, and believe me it will help
You take care and here's some hugs to be going on with (((((()))) xx

frogmorton

Hi tinydancer

welcome to the forums form me too Tis lovely to meet you.

Getting a 'proper' label must be a lot to take in on it's own without adding MTX too.... :?

Give it time read all you can - especially other people's experiences of it.

I hope you will feel reassured.

Love

Toni xxx

tinydancer

Hi all, thanks so much for the warm greetings on joining this forum.
Yeah I agree that googling etc is not always a good thing, the Internet is a dangerous tool sometimes
I remember when I was put on the sulphazalazsine I was scared about that too, thankfully had no side effects whatsoever think that's why I'm so worried about starting something new, just fearing the worst.

Will need few days for it all to sink in before I decide what I'm going to do.
I'm only 38, feel to young for all this

AutoimmuneResearcher

Hi tinydancer

I do agree that the Internet is a haystack of information. You have to be selective and lok to authoratative sources.

In case your doctor or rheumatologoist has never mentioned this - it might be worth a look. Gastroenterologists are not often consulted in arthritis!

http://gut.bmj.com/content/55/9/1240.abstract

http://ukpmc.ac.uk/abstract/MED/16484508/reload=0;jsessionid=vNQ0u0iUinkHF0SrZmqt.138

Strength to you all whatever you try!

dreamdaisy

Hello again tinydancer, I hope that you are feeling a little more settled in yourself. I see that AutoimmuneResearcher has added his twopennorth: I think I correctly recall that he has AS (which is not RA) and although I am content that he is able to control his condition through diet I would say that your condition is not his and what works for him may not work for you.

I think it better for you to listen to those who know your medical history and then to those who are on the same medication - should the meth not help then it may well be time to research further. I have a lifetime of food intolerance behind me and I can truthfully say that no matter what I avoided it made no difference, either to the eczema, asthma or now my PsA (psoriatic arthritis) and OA. Too much pickle appears to exacerbate the arthritic pain but woman can live without Branston (and the other kinds). I wasted a huge amount of time (and money) seeing a homeopathist before I gained a referral to the hospital and I followed her anti-inflammtory diet, during which time my left knee just grew and grew and grew. :roll: For one's general health it makes sense to stick to as fresh a diet as possible and to avoid too much processed/mechanical food but this is a later debate for you. Let's clear the meth hurdle first, yes? Take care. DD

traluvie

Just wanted to say hi and welcome to the forum..

xx xx

tjt6768

Hi Tiny, welcome from me too........... I am a good few months into taking sulfa and although it has helped calm my hands and wrists down (and helped greatly with the IBS/IBD) it has made me lose my appetite, have lost over two and a half stone.. I think Meth may be the next option for me too, so I wish you the greatest of luck, please let us know what you decide and as DD said, you shouldn't listen to any mumbo jumbo diet nonsense...........

Be well mi dear

[Deleted User]

For those of you who commented on my post yesterday I am very grateful. For some reason my post has been removed :x :x :x Not happy about it to say the least

I was told yesterday that I have rheumatoid arthritis and I'm on sulphasalazine. My rheumatologist wants me to now go on Methotrexate and I'm petrified to say the least.

Tinydancer 26thApril

Post moved by Moderator to the original thread
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[Deleted User]

hi i can understand that you might be worried but you will be monitored closely and they would only be putting you on it if needed the meds are expensive and not given with out reason.
but it is up to you but there is always the damage that ra does and it can not be repaired once it has happened so stopping it or slowing it the best way to go it can affect the heart as well as joints and tendens so think about it and ask questions you can usually contact your rhummy nurse who will give advice to help you good luck with what ever you decide val

Valval 26th April

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[Deleted User]

Hi

I didn't get a chance to read your original post, but totally understand about taking the Metho, I have been on it for over two years now and still cannot get my head around having to take it, but it certainly helps to stop the RA in its tracks and as long as you have blood tests regularly hopefully it will help you long term.

Take care x

Trees 26th April

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[Deleted User]

I wondered what had gone on with your post...I did think it was my brain getting all foggy again.
"Why on earth have they taken it off, I know there was a reply off someone doing work in Arthur...but I for one found it very interesting...
The least they could have done was delete there post and not everyone else's
Im so sorry you have been treated like this, and being new to the forum doesn't go down well for the mods.

_________________
Lots of hugs
Barbara xxx

26th April

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[Deleted User]

Val's given you some good advice there, tinydancer. It's a lot to get your head round when you've not been diagnosed for long and many of us start off by rebelling against the meds we've to take. However, meth and sulf are a very common combination. I think they are two of the oldest, best used DMARDS and, besides, you will be well-monitored while you are on them.

There were no DMARDS when I was first diagnosed. I took anti-inflamms and occasionally steroids for years. Believe me, the meth & sulf option is better.

_________________
Confidence is the feeling you have before you really understand the problem.

Stickywicket 26th April

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[Deleted User]

Apologies Tinydancer,

The thread was put in quarantine overnight, however it is back now and I have moved the posts made on the new thread to the end of here for continuity.

Take care
Moderator
(YEH)

tinydancer

oh ok at least its back now, thought I had it deleted for something I had written

mig

Good that its back,how are you today? Mig

dreamdaisy

So it wasn't my imagination! I could have sworn I saw a thread from tinydancer and couldn't understand where it had gone.

I have been taking sulph for ten years now and have had no trouble with stomach-type side effects until recently, when I was given sulph from a different manufacturer. I have managed to deal with that however, and there are two points worth remembering: we all react differently to meds and the same drug can be used to treat a range of conditions.

timydancer, you have a great deal to consider at the moment and I realise that this is a far from easy time for you. Meth can be a very effective treatment and it is important to protect your joints from potential damage as that damage cannot be undone. That is the crucial thing but only you can make that decision. The fear of the unknown is something we all struggle with but the only way a thing can be known is to try it. I wish you well. DD

tinydancer

mig wrote:

Good that its back,how are you today? Mig

Hi mig....I'm feeling ok today, still not decided yet what to do though. Will have a think about it over the weekend. Maybe give my Rheumy nurse a call and ask her to run over it all again.Maybe reading too much into it is the wrong thing to do :?

dreamdaisy wrote:

So it wasn't my imagination! I could have sworn I saw a thread from tinydancer and couldn't understand where it had gone.

Thought I was imagining it too I went on this morning to read over all the posts again as they were all very helpful to me and couldnt find it.

dreamdaisy

Oh dear, I was worried about that happening. I have no idea why it was quarantined but I am pleased it's back. I hope that you are feeling a little better in yourself today and not quite so daunted by it all. DD

AutoimmuneResearcher

Hi tinydancer

As other posters have commented on my earlier posts the effects of diet are different too. This study from Sweden showed only 40% of RA sufferers of a given diet. It is in a publish medical journal.

We are all different - but in this case 40% were similar enough!

http://www.ncbi.nlm.nih.gov/pubmed/11600749?ordinalpos=8&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum

I'll try not to post too much mumbo-jumbo.

stickywicket

I would really love your theories to be right, A.I.R., but I do worry that some newly diagnosed people might be tempted to abandon their hated meds and go for diet alone instead. However, if they wanted to try both, I don’t see a problem.

I’ve checked the research you mention. The 40% you quoted as ‘improved’ on the vegan diet actually consisted of a mere 9 people. Plus, one of the control group – or, if you prefer 4% - also improved on their non-vegan diet. I don’t think a statistician would regard such small numbers as significant.

Even the researchers merely concluded:
The data provide evidence that dietary modification may be of clinical benefit for certain RA patients, and that this benefit may be related to a reduction in immunoreactivity to food antigens eliminated by the change in diet.

AutoimmuneResearcher

Hi stickywicket

Either I have misread or not understood - this study clearly says

RESULTS:
Twenty-two patients in the vegan group and 25 patients in the non-vegan diet group completed 9 months or more on the diet regimens. Of these diet completers, 40.5% (nine patients) in the vegan group fulfilled the ACR20 improvement criteria

I admit a vegan non gluten diet would be almost impossible for some to follow for a whole 9 months. Not sure I could do that! Then again this study did not check if it was the vegan bit or the non-gluten bit that did the trick. If there are 60% non responders to a very long term diet change then I can understand the scepticism. Also I wonder how many adhered to this diet in the study? Given that these studies exist - I am surprised more have not been done.

tinydancer

Hiya

I haven't had the time to look through what the Autoimmuneresearcher has posted, i will but just not had the time.
When I first saw the rheumatologist 3 years ago we asked him If diet helped and making it better/worse. He said not really, I eat a well balanced diet, have my 5 a day, sometimes more. So in the diet respect I am very healthy apart from the odd chocolate binge here and there and I hardly drink alcohol. Only really on nights out, and they are few and far between.