Thank you.......

[Jo883]

I just want to thank all of you that have taken the time to reply to my post regarding Methotrexate. All of your comments have really helped in more ways then you could imagine. So thank you all!!

Just want to add that I'm still reading/trying to find replies but it will only let me see so many answers - even if I try newest to oldest in replies. So please bare with me if I have not yet replied!! Xx

Just received my next Rheumatology appt in post although I was told I would need to be seen in 4 months the appt is actually in 6! I do understand that they are busy. But does that mean I need to go and discuss the taking of methotrexate with my Dr or wait another 6 months till I see rheumy?!? I guess I will head to Drs first and sound him out - I just feel like I'm bumbling my way through it!!

Sending healing hugs and well wishes xxx

[Hidden]

Hi I have exactly the same problem but only on my iPhone - I can read them all on my laptop. Are you using an iPhone or an iPad perhaps?

I also had exactly the same problem seeing my rheumy after being diagnosed with RA and put straight on methotrexate - I fel abandoned because he said he would see me again in four months and finally it was eight! But because he knew this would happen he write a note instructing my GP to put me straight on Methotrexate. You should certainly not have to wait for long until you start this drug. It might be a wait for your rheumatologist's letter to get to your GP though but that should get the ball rolling - if not your GP should be able to contact them in your behalf.

My GPs were very good about letting me go and ask questions such as "should I still be flaring?"

Have you been given a helpline number or a specialist nurse to contact? I don't have these because I live in a remote place so I rely heavily on my GPs - who aren't specialists but will at least email him on my behalf and he usually responds fast. Twitchy

[Jo883 in reply to Hidden]

Hiya Twitchytoes

Yes I mainly reply on my iPhone, so you may well of hit the nail on the head there!

I think that is some very good advice, I will give it time for the letters to get from rheumy to drs and then go and have a chat with my Dr about the ins and outs of everything as I feel my Dr needs to be brought up to speed also. I had a very nice GP who has left that always makes me a little uncomfortable. The Dr who I have in place, I have yet to build a relationship with. In the past he has said that I have chronic pain syndrome - which I never believed although I do understand the concept behind it, I've had a few changes in Drs - the first didn't think my illness was autoimmune - so didn't bother checking, the next wanted to refer me to the ME clinic in Southend and the Dr I had now gave me the chronic regional pain syndrome - and when I last spoke to him said 'if we are going to peruse this route of connective tissue disease' !!!

Thankfully one good Dr listened - what a debacle!

I did feel a bit scared of the whole methotrexate thing - but thank god for everyone on here, who have helped educate me!! I so wish I had a lupus nurse to ask. It's what we all need at times. But no such luck here.... Still now I know that I should be monitored on it at least I know what they should be doing! Thanks for yr reply

Well wishes x

[Hidden in reply to Jo883]

I understand just what you mean and how you felt although I don't actually have a diagnosis of Lupus but of RA. Fortunately I have three great GPs and had clear indicators that something inflamnatory and autoimmune was going on.

I am presently doing battle with my rheumy to try and get the diagnosis shifted from just RA to something more systemic. Otherwise he is only ever going to assess me on whether my joints are swollen or eroded and not on other "more minor" but equally debilitating issues such as fatigue, nose sores, dry eyes and Raynauds. Many with RA get some of these too and I know there's a lot of crossover but I get so little by way of joint swelling that I end up feeling like a time waster even though my inflammatory markers are high and my words tell him all is far from well!

Good luck with your GP. I think the best approach is to be well informed and clear with him as 6161 has said.

If we present ourselves initially as over anxious people then I guess that is how they will treat us. You have a diagnosis and are being put on quite a powerful drug - that wouldn't be happening if your condition wasn't more than just chronic pain. If he got it wrong to begin with then he will have to start on a clean slate now. So perhaps don't just wait - go in as soon as possible and tell him what is going on and hopefully you can both start on a clean slate?

Twitchy

[Jo883 in reply to Hidden]

There's been so many twists and turns along the way, I could add other diagnosis's to the list!! The chronic pain diagnosis was given a fair while ago - my journey has taken 23 years to this point. The one thing that I've always had,thankfully is the belief in myself - but because of everything - lack of trust in the medical field I also think well - is this really the final diagnosis?!? Lol! I thought I had RA at the start mainly because I hadn't heard of any other illness's that cause bi-lateral joint pain. I don't get any joint swelling but did have 2 lots of bakers cysts on both knees in the first year that my health conditions escalated, which tend to go with RA. I would keep going with yr diagnosis - nose sores ulcers, dry eyes - fatigue very familiar - I also have livedo reticularis - time before last I said to rheumy there's only 3 illness's that have livedo and that's RA, APS and lupus - and she said yes! She also said it's not RA because I don't have any outward sign of joint inflammation so that was discluded - so you could well be right and you know you better then anyone. I have to say they like to hedge there bets but c'mon already - why not try you on planquinel they didn't seem to mind putting me on it even with negative blood work!! I'm old enough and ugly enough to tackle my Dr now it's just unsettling to have change esp when you last dr took the time to listen and hear what you are saying!!! Keep on keeping on twitchy!!

[Hidden in reply to Jo883]

Gosh we do sound a bit similar although I'm really only just beginning to see how long my own journey has taken. I had eczema and alopecia with endless idiopathic allergies from early childhood but rarely went to the GP - just took this skin stuff for granted and used steroid creams and the odd bout of oral steroids and that was that. Finally it all vanished overnight and I had a few years reprieve.

Then RA hit. Now all the skin stuff has started but as urticaria not as eczema. I've tried Plaquenil twice - first time with MTX and it did little to bring inflammation down - second time more recently I tried it on its own for four months. Rheumy thought it unlikely to do much for my but agreed to let me try it on its own.

Re methotrexate I had so many different symptoms after 18 months on It that my GPs wanted me off it I case it was the cause. This was 8 months ago and RA as I had it before (like fracture pain in my joints - hands especially bad) has never returned but lots of other stuff has kicked off now instead.

Unfortunately while the Plaquenil worked wonders for my joints and brought ESR down from 62 to 17 - it made my hives much worse to the point where I nearly had anaphylactic shock so I came off it after four months.

Tried Sulfasalazine too a few years ago but ended up in hospital after 3 weeks with a purple all body rash and swollen neck and ears!

So now its back to the devil I know - MTX by injection 10mgs only. It makes me feel lousy with nausea and fatigue the next day but since I'm wiped out anyhow that's kind of okay really! And it is only a day - and hopefully I will get to see this other chap for a second opinion and he will be able to make more sense of it and tell my rheumy (his colleague) how to treat it more effectively. Even if I end up with Undifferentiated Connective Tissue diagnosis rather than RA - at least this would incorporate all my symptoms not just swollen joints!

May the force be with both of us eh and teach these medics a thing or two! Twitchy

[Hidden]

How frustrating, I have that problem sometimes. Despite tips it still happens sometimes so I can't advise. Your GP may have more time to discuss methotrexate, than rheumy. Also rheumy nurses, if you have one, are even better. When prescribed metho, the pharmacist gives you a small booklet which is your responsibility to read. Maybe you could ask your local chemist for one. If it were me, knowing how valuable your rheumy appts are, I would go informed and just be ready to say yes or no. Otherwise, anything else that you need to talk about, will not be given a fair time to be discussed, as it will have been used to discuss the metho. Start researching it now, good and bad, and if there is a particular issue that worries you, then post again. I certainly won't mind helping where I can, and am sure others will too. Remember, no Dr is going to commit to you a promise of no side effects. Ultimately, the final decision will be yours.

[Jo883 in reply to Hidden]

Hiya 6161

Thank you for your very sound advice all very good ideas. It really helps a lot. I think I was just taken aback a bit really - and then a little scared. But I can see the logic so I will gather as much info as possible and take it from there. I've gone from no I don't want to do that, to well maybe it's not so bad and may help me, but at least I also know about having blood tests regularly to monitor my liver and also about any problems with breathlessness etc - all thanks to you all. I also know that if it doesn't suit there are other drugs to try! I'm also going to talk to Dr about trying jabs over tablets as people seem to be able to tolerate those better and so I think that's a fair compromise and a good place to start!! Thank u once again for ur valuable input.

Well wishes Jo xx

[Hidden]

Ps they tend to only put people straight on jabs if they have pre-existing stomach problems such as ulcerative colitis. This is because the pills are much cheaper and for many they work perfectly well so they usually make you try them first.