Now I'm itchy on top of everything else.

[fridayfever]

sorry here to have a moan as feel its all I do lately and hoping you don't mind and didn't want to inflict on husband again.

Had Ra for 2 years now and can't remember a pain free day 12 months prior to diagnosis or since. Finally started mtx 9 weeks ago and have either felt nauseous or been sick nearly every day since, doctor put me on omeprazole and metoclopramide to a small degree has helped but doesn't completely get rid of it. I take it on a Friday and my weekend then gets written off completely. Recently diagnosed also with secondary sjorgens and anaemia. The last couple of days have been worse than ever, stomach pains, back and hips hurt, hair coming out and now skin is so itchy all I seem to be doing is scratching, energy levels at an all time low, all this on top of my normal areas affected by ra. No appointments available at doctors and still awaiting phone call back from ra clinic. Feeling at all time low and very sorry for myself. I shouldn't be like this at thirty years of age, feeling very resentful towards ra and the control it is having on my life. Constantly fighting to keep my independence lately.

Thanks for letting me get this off my chest xx

[Hidden]

Oh dear, poor you. Have you thought about going back to your GP with these new symptoms? It might be that you are having some kind of reaction to the MTX.

[cathie]

pb52 could be right. I developed an unbearable rash after 2-3 weeks on injectable mtx. Came off it and back to the pills and the itch has gone. I do hope you can get through this -

I did find that antihistamine cream helped a bit...

[earthwitch]

I'd be concerned about all those symptoms too, and wondering if the itching was the beginnings of an allergic type of reaction. Yes, please do go back to your doctor, and don't let them brush you off. Make sure they really understand how badly this is affecting you.

[Victoria-NRAS Partner Moderator NRAS]

Hi Fridayfever

I agree with the above and think you should see a doctor about the itching, in case it's some form or reaction or anything else that might need medical attention.

Also, regarding the nausea I think it is worth mentioning this to the consultant again. Sometimes this side effect can naturally lessen over time as your body gets used to the drug, but if it persists there are often things that can be done to help. Sometimes looking at when you take your folic acid can help, or anti-nausea tablets can be used, but if changes like this don't help and you feel sick throughout the weekend it may be worth asking about potentially having the methotrexate by injection. Nausea is less common with the injectable methotrexate, as it goes directly into your blood stream, rather than going through your digestive system.

I certainly hope that both the nausea and itching improve for you soon.

Kind regards

Victoria

(NRAS Helpline)

[fridayfever]

Thanks all for your replies, nurse has phoned and I am not to take mtx until I speak to them again next week. Also went down to docs who managed to get me in as an emergency. Initial tests indicated blood in my urine so possibly kidney/ urine infection , so have been given antibiotics whilst further tests are done along with extra bloods next week and more painkillers and a lecture about not acting sooner in a nice way. Plenty of rest and fluids over the weekend. Thinks the itching is a reaction also.

When I started on mtx I inquired with the locum rheumy at the time whether I could have it as injectable form as I have suffered in the past with nausea and vomiting due to medications and query ulcer and acid problems at which I was refused, not that I wanted to inject but knowing my body I guessed I would suffer and wanted to preempt all of this.

Will see what the coming week has in store for me. Xx

[meow24]

Im 31 and I have had ra for two years now and only started mtx 5 weeks ago but at the same time they gave me a steroid injection. I have been pain free ever since so I feel like its a miracle temporary cure. Have you been offered the steroid injection, its definitely worth having.

[fridayfever in reply to meow24]

Hi meow

I've had a couple of steroid injections this year along with steroid infusions and oral steroids and nothing lasts more than a couple of weeks relief for me unfortunately and the inflammation doesn't seem to be responding to anything at all.

Rheumy nurse says we will get something to work one day but its just getting the right mix and not having any side effects.

In the mean time its just trying to get through each day.

[Hidden]

Its a shame they won't let some people go straight onto injectable MTX in the first instance but I don't think they can until the oral method has been tried first in most places. The injections are significantly more expensive is the main reason. Glad you saw your doc and got through to your rheumy nurse. I hope you feel better soon - its hellish being itchy I know. X

[Hidden]

Tilda...I think the reality of going straight onto injectable MTX is slightly unreal.....there are hundreds , if not thousands of patients out there, who manage very well on oral MTX- why would they want to have to give themselves an injection weekly and have the associated risks. Makes perfect sense to be on oral and see what results are achieved first

Friday fever....I cannot comment on what you are being prescribed but can offer advice from my own perspective.....one of the things I was advised to do was to increase my folic acid....you would need to do the guidance of your care team.....in the meantime I do so know how you feel and all I can says it will get better, might need to exercise some patience but it will get better and there are many here who will help you along the way

Also so not forget the NRAS- they have a help line and I have used it and was met with nothing but support and encouragement

I do so hope you have a peaceful weekend

P

[Hidden in reply to Hidden]

I carefully said "some people" not everyone. As you say a lot of people tolerate oral MTX well but if a person has a history of intolerance to drugs then it can be very daunting to start MTX and perhaps this should be borne in mind on occasion - there's room for pragmatism?

[fridayfever in reply to Hidden]

Hi Tilda

Thank you for responding.

I think it is a shame that they medical professionals can not take into account a patients input on treatment for things like this.

Do not get me wrong to think about injecting myself is not something I would relish but I knew that I would not cope stomach wise with this medication after previous responses to meds.

[sparker in reply to Hidden]

Hi Tilda you are so right.... I wish that medical professionals would listen to us as in most instances were are the ones who know our bodies and it's bizarre reactions best.

[fridayfever in reply to Hidden]

Poppylady

Thank you for your kind words

I was apprehensive on starting mtx and my stomach but you can't knock it until you have tried it, did have one day pain and nausea free which I celebrated on having thought I had turned a corner and it had all been worth it. Got cocky and bam again ra at its worst.

I have no consistency with an ra specialist at the moment which doesn't help but the locum go I saw today at my go surgery couldn't have been nicer and said he would be there for a couple of months if I ever needed an appointment.

[Hidden]

Glad to hear that the nurse got back to you before the weekend. The kidney infection will be making you feel horrid too - poor you

I know that the early treatment months and years can be very difficult and it's not surprising that you're feeling low with all these unpleasant side effects plus joint pain. But you will find a drug regime that works for you, it's hard that it takes months to get to an effective level in your system, but hold onto the knowledge that you can and will live an enjoyable and productive life with RA.

Yes, it might be different from what you imagined it would be, but with all the newer drugs and continuing research into RA there is real hope for drug-induced remission:-} Your life isn't over at 3O - RA has temporarily pressed the 'pause' button that's all.

Keep on posting and get the support that you need, you're not alone:-}

Cece x

[fridayfever]

Hi Cece

Thank you for your response.

I hope so and soon, the pain from my wrists and feet are bad enough without anything else.

I just hate it when someone or something else has control on my life and there isn't much I can do about it.

I'm just having a feel sorry for myself few days, I'll pull myself out of it. Xx

[Ronnie63 in reply to fridayfever]

Hi

I totally understand, I hate not being in control and still find the random and unpredictable nature of RA difficult nearly 2 years on. Having joined this site only 6 months ago, I believe it has given me more perspective on the disease, I realise that we all cope in different ways from each other a lot of the time but equally recognise a lot of the emotions that come across on posts. So never feel bad about feeling sorry for yourself as it's without doubt a universal emotion, and we need to acknowledge or express it to work through it. Eventually we'll get to a better place wherein we can envisage being able to do everything we used to do......... I wish you well

Ronnie xx

[Hidden]

Well one of the hardest things to deal with in life is uncertainty, about anything - couple that with feeling that you have no control over a situation and you get a double whammy

I always think that information is power - you can read lots of excellent information on the NRAS site plus download pdfs of their leaflets. The helpline is a great first port of call if you have a specific question or worry

too:-}

Cece x

[fridayfever]

Hi Cece and Ronnie and everyone else who has commented.

Many thanks for your kind words.

Unfortunately I am my own worst enemy sometimes and do put myself under a lot of pressure.

Not quite ready to give in yet but have had a very stressful twelve months which I think is now taking its toil and unfortunately I don't think its quite over yet.

I don't live near my family and friends currently and have felt very isolated at times and my father gets quite upset when he knows I'm in pain so I tend to try and hide it most of the time.

Thankfully I have a very good husband.

I do try to read about the illness and meds but sometimes I think its best not to know so I don't prejudge before trying.

Here's hoping something hits the spot soon.

Debbie xx

[sandraw21]

Stop the tablets !!! If all symptoms started with them then stop them. You do not have to keep taking something that is making you ill. Stop them now. Take paracetamol for pain till you see the doctor

[ibere]

Ibere

I agree with sandraw2. I wish I had stopped methotrexate earlier, I still have problems. It really disagreed with me.