Chemo meds???

[Briggsy]

Hi doc said the hydrochloroquine is not working and wants to start me on low dose chemo meds any advice knowledge or experience please I'm nervous about it :0(

[Hidden]

Hi, I was wondering if you feel you can tell me what your current situation and symptoms are?

My consultant is saying the same about hydrox and asked me to consider chemo.

From what I understood from our conversation it is low dose and you shouldnt get all of the nasty side effects, but maybe a few of them.

xx

[Briggsy]

Hi after years of symptoms, painful stiff joints fatigue and rashes thought I'd got a diagnosis last week from the doc of SLE but then saw the rheumatology consultant this week and he's suggesting connective tissue disease I also have rynalts ( I can't spell) and anti RO antibodies - my daughter had heart block due to this. Lately been having emense headaches and my hip keeps going :0(

[lucy-may]

Hi Briggsy, I have SLE and take hydroxy and Methotrexate which l understand is a chemo drug, I have not had any side effects so far. I have to take folic acid with this, amoung many other drugs l take, hope this helps, good luck x

[Briggsy]

Do you mind me asking what else you take as I'm struggling to find a combination that doesnt make me drowsy. With 2 under 5 and Uni full time this is a must for me. Can't remember the name is it gabepentin really didn't work for me at all.

[lucy-may in reply to Briggsy]

Hi The list Thyroxine /Blood pressure tabs /hormone tabs/ hydroxychloroquine /folic acid which stops side effects of methotrexate/adcal for bones/alatronic acid for bones/ tramadol pain/celebrex pain/ was having steroid injections but taking methotrx l was able to come of the steroids./ amitriptilyn/ esomeprazole/ The only one that makes me drowsy is Amitriptilyn hopes this helps, quite a mixture.

[Hidden]

Hello Briggsy - you don't actually say what drug they want you to take? Is it methotrexate?

[Briggsy]

Thanks Lucy-may that does really help thank you. Yes maggie I think the one there suggesting to me is the methotrexate.

[Hidden in reply to Briggsy]

Many people do very well on MTX for many years. I'd give it a go if I were you - and not think of it as a chemo drug, as you take a (comparatively) tiny dose, once a week.

[Delila]

I had the chemo drug some years ago due to not responding to the drugs I was taking and to try get me off prednisolone. I had one tablet once a week for six months, was initially meant to be three months! I had to go to hospital each week for the drug to be administered and was quite ill afterwards and probably for the next day or so, after that I was fine till the next dose. Unfortunately it didn't achieve the results my doctor was hoping for but I do know a lot of other people have had success with it.

[tinkerbell12]

Hi i have SLE and i have rituximab 2 infusions 2 times a year which is a chemo drug it wipes you out and you feel weak and stiff and ur energy levels take a while to come back to what is normal for you bt you dont get any of the really nasty side effects and it really is a good drug.