Flu Jab update!!!(Sorry my turn to have a bit of a Moan)

Hi

Steroids have taken almost 7 days for me to feel the full benefit. However I am drained of energy by the wkend, as I take mtx on saturday. I feel so tired, until bout tuesd/wed. Last wednesday dropped a mug of tea on the cream 90% wool carpet in our bedroom. The carpet is now so bloody stained & i feel so guilty. could not support the cup with my weak wrists.

My hair has started to thin. It came out in droves in the hair dressers on satureday. I could not look as I felt as if I was just going to burst out in tears. My poor hairdress did her best to hide it! I had it cut by 3-4" as it looks now painfully fine and the roots are so delicate.My hair now lacks voume - I am not bald, just much thinner as I use to have thick hair. I hope that it does not thin anymore, but I am surprised how quickly this has happened as I have only taken 2 doses of mtx, so far. My GP has attributed this to mtx as she says its a very cytotoxic drug.

Been signed of from wk for a further two wks as I am now suffering from anxiety & depression." My god it does not pour it floods with RA". I have low self esteem at the moment partly due to whats going with my hair and anxiety due to work, they are slow to offer support, and yes more time of!

I've got a whole months of tests, every wk I am at the hosptial for either pulmonary test (what's that?), physio for my hands (at long last I have an appt. next week - hooray), every other wk bloods, gp appts & something else, but can't remember now. I think that a postive thing that I am now in the system, but alas I don't have the energy for all this and finds the prospect alittle daunting, especially as I have to do all the appts. on my own!

I feel as if I need time to regroup, the realisation that RA does not wait for any man or women for that matter has hit home hard. I absolutely hate it, as I can't control it and I feel as if I am being dragged along with it as an unwilling particpant - help I want to get off now!!!!

At my last blood work I hoped they got it wrong and were going to tell me that I don't have ra, but something else, heres some medication, you should be right as rain in a couple of wks, no need for any follow up appt. Go & GET ON WITH YOUR LIFE AGAIN; f***, if only that was true. Alas I am realist and a fighter, so when I feel up to it, I will probably plod on, but not today.

I did manage to have my flu jab today as i saw the gp, she offered to do it there and now, rather than have me recalled back. Well pleased I did it and it did not hurt as the needle is very fine (another injection i've done on my own whippeeee).

Thanks for listening and taking time out to read this blog.

Take care Sci (Joanne)

20 Replies

oldestnewest
  • Will my hair continue to thin (loss)?, how long will that go on for???

    Thank you so much for your reply. I have no other symptoms with mtx other than extreme tiredness and on the day I take it (I split the dose), I have experienced ever so slightly some queeziness mainly after the first dose in the morning. Relunctant to come off it as I need another dmard - on plaquenil also. Hoping mtx will boost effects of plaquenil and reduce the everyday pain i have experienced, once the steroid course has come to an end.

    Cheers ~Sci

  • Yes as you found out the flu jab doesnt hurt!, I am sorry you are having a rough time. I drop things sometimes too and cant open things it is a nightmare. get people at work to open my healthy yoghurt drinks.. I just cant open them!

    I think you need this time off, you have had the shock of the diagnosis and a lot to deal with.

    There are several salon type hair thickeners on the market I hoping that some one on here will recommend on that they use?. There is a product that can be used for thining hair minoxidil this is sold in pharmacies under the trade name regain.. ,you could see if Go will write you a prescription. it is not commonly found in hospital pharmacies., only retail pharmacies.

    Unfortunately methotrexate can cause hair loss, this may possibly settle down more as your body adjusts?.

    Work can be v unsupportive and I have suffered the same problem.

    I went through the same anger and dispair as you, but as your treatment works and things start to improve you will feel better I promise xx

    Alison

    Hope I have helped you are not alone!

    take care xx

  • Hi

    thank you, you have moved me to tears, I really hope I don't loose any more hair and that my body settles down and the hair regrows back. I have thick dark brown curls, which was on the top of my shoulders. Now it is very fine and doesn't even cover my neck.

    Rheumy suspects I will need a higher dose of mtx, so I reckon on my next review which is christmas wk I will be put up to 15 mg a wk,from 10 that I am currently on; providing I continue to have good bloods! Will that cause further hair loss????

    I see GP nexy wk again, I will ask for the prescription. I will let you know how I get on

    Cheers Joanne

  • Hi Joanne

    From your post it sounds like youv'e just been diagnosed? For me the first 6 mths after diagnosis were the worst as you wait for all the test and adjust to a different lifestyle it seems that your'e never away from GP's hospitals and i felt like a pin cushion! so your feelings are extremely normal.MTX can take up to 12 weeks to work properly so hope your steroids are helping and that you have good pain relief?

    A lot of people with RA also suffer with depression too Maybe a short course of anti depressants may help through this difficult patch-just an idea i don't take them but their are lots of people on here who find they help.

    Don't be too hard on yourself -it's a life changing disease and it will take time to accept and adapt.Rest as much as you can and the NRAS helpline is brilliant too if you want to have a chat

    Take care and i will be thinking of you

    Julie XXX

  • Hi

    Yes I am a newbie. My disease is yet to be managed. Daignosed 22 August 2011.

    What you described is exactly what is happening now. It's a hum dinger, but thank you for your understanding.

    Joanne

  • pulmonary refers to breathing/ lungs.. may be a lung function test or a chest x-ray?

  • Hi Ally

    they are looking at both, but I don't know what the test involves. I am already out of breath as I so drained of energy at mo. Any activity makes me breath heavy, even walking up 3 flights of stairs to my bedrrom (I am in a townhouse).

    I have birth defect (dormant as in it does not cause any problmes), but still can be heard hear murmur and if i remember correctly its located in chamber that discharges into the aorta - if that helps.

    Joanne xx

  • So sorry to hear you feeling so down it breaks my heart to hear other peoples sorrows, please take on board everyones advice and i hope you will soon be feeling better xxx

  • Cheers

    Jxx

  • I am sorry to that you are suffering so much at the moment. It also reminds me of when I was first diagnosed. I hope that Mtx works for you, it has for me and changed my life, but I didn't suffer the hair loss, thank god because I have never had thick hair anyway!

    If I remember correctly I think you work in a school?? I had just started my job at school when I first started to develop symptoms of RA, I suffered all through the winter and dragged myself into work everyday because I felt that I couldn't take time off from a new job. I only had one day off when I developed a rash from head to foot from taking Sulphasalazine. Looking back I should have looked after myself better but hey ho...

    You say that work are slow to offer you support, I don't know if you are support staff or teaching staff but in my experience teaching staff are well looked after by their unions whereas support staff don't seem have the same. This is only my opinion based on what i see everyday in my school i don't want to get all political on here i do want to get to bed tonight - LOL!

    I read on this website (I think) recently that RA comes under the Disability Act

    why don't you have read through this, it can be downloaded from the NRAS website:

    nras.org.uk/help_for_you/pu...

    I hope you start to feel better soon and no matter how Sh*t you feel get yourself out in the fresh air for a walk, I always make sure I get out with my dog no matter how much my feet/knees/hips ache, it always makes me feel better.

    All the best to you

    Lyn x

  • Hi

    I am a teacher in a secondary school. I too get out 4/5 a wk to walk the dog. It has become the only exercise that I do, as I am really battling with it at the mo, and of course I am taking public transport every where as I cannot drive due to wrists and knee at moment.

    I have requested equipment change to try and make my day easierbefore half term. We have got to the chat about it stage - hence slow to support. At present no work place assessment has taken place and when I feel up to it I shall formerly request one.

    Hence in my opinion my work will only do as much or little as they can get away with. Until I start shouting for more support or get the unions involved. Not up to either at moment. Sort out treatment and stabilise myself then tackle my work issues.

    I hope that helps

    Joanne

  • Hi Joanne,

    I'm sorry that you're having such a difficult time at the moment:-( I'm afraid the early days are tough - truly shock and awe - but it does get better. You adjust and come to terms with it and learn to live with RA rather than it dominating your every moment.

    The right combination of medications takes time to sort out but you will get there and that makes a big difference. Be sure that you have adequate pain relief - take it consistently to get the best effects.

    I'm afraid that the fatigue is one of the most intractable symptoms - but Pacing makes the biggest difference (resting when you need to] - as you're at the hospital so much anyway ask for a referral to Occupational Therapy they're really helpful with all kinds of modifications, equipment and tips for living with RA and will help you to get to grips with Pacing.

    I hope that tomorrow is a better day,

    Cece x

  • The first few weeks are the worst. MTX is very slow but in my case it got there in the end. 20mg/week is just about top whack for my age but 5mg folic acid and hydroxychloroquine daily have prevented any side effects and my hair is okay. When I was diagnosed in 2008 I couldn't do anything until I'd had steroid injections and had to use mother's stair lift and bath lift and bought a recliner/ lifter chair. Don't need any of that stuff now. My muscles are back to strength and can walk miles. Still get a few aches and pains but the occasional nsaid or paracetamol with rest fixes that. You'll probably progress slowly in this way so don't despair. Somewhere out there is the medication right for you. There are seriously powerful brains out there looking for a fix for this nasty affliction. It'll come - sure as eggs are eggs

  • I hear so many of you saying that you have had the flu shot and are on Methotrexate as well. I have been told that I can't have the flu shot, nor shingles shot, nor penicillen shot. Just wondering what the difference would be. I was told that I cannot have any live vacines. HELP.. lol

  • Hi

    Sorry hear your predicament regarding vaccination. It sounds that you are one of those peps that have severe reactions to vaccines and are thus advised not to have them.

    the flu vaccine uses "dead or inactive" cultures, thus no disease symptoms will be experienced whilst providing immunity! Hence why we can have it whilst on mtx.

    I hope that helps

    Sci

  • Oh my poor luv,your in a bad way aren't you. It will get easier i say but its not helping you now is it. Don't apologise for having a moan and feeling sorry for yourself we all do it and i've done it quite a bit in the last few weeks so your not alone. Are you working full time or part? have you thought about reducing your hours. Sadly i can't work. I will be thinking of you and sending you my thoughts to help you through this difficult time.

    Love sylvia.xx

  • On the flu shot I think it isn't a live vaccine

    I came to this site a year ago over a similar dispute and was helped. The consultant at my hospital told me in September to have the flu jab and just not say anything to the anti tnf team. But it's worth following up with gps and the nras

  • Dear Sciqueen

    You are so new to this, and it will take a while to fully come to terms with things. Glad to see that you are getting a lot of support on here!

    A couple of points that I thought might be helpful:

    1. Regarding the slight quiziness, this is common and usually gets better as the body gets used to the drug, but if it becomes more of an issue let the rheumatology team know, as there are things that can help, such as changing the dose or days you take your folic acid, taking anti-nausea tablets or switching to injectable methotrexate.

    2. Regarding the hair loss, you should bring this up with your rheumatologist or nurse next time you see them. The NHS patient safety alert document on methotrexate says:

    Thinning of the hair:

    This can happen, although it is uncommon and, if it does happen it is usually slight. Hair growth usually returns to normal on stopping treatment. If you feel this becomes more than a very slight hair loss you shoudl discuss it with your doctor.

    Hopefully it will not continue to thin, but if it does, and you are concerned then you need to discuss this with the rheumatology team. When your self-esteem is already low, this is the last thing you need. I hope it has thinned as much as it is going to, but if not it will hopefully return to normal if they stop the treatment and try you on something else.

    Hope this helps!

    Victoria

    Helpline & Information Coordinator

  • Hi sciqueen,

    please please dont think you are alone with your feelings - i have had ra for six years and am new to this site having fought andfought my own feelings of inadequacy on my own - it is so comforting to know there arepeople who feel the same.

    my hair was one of my biggest worries but it has thinned and ithought it

    wouldnt stop but it has. i can still have my blond tints done so can still try and bethe beachbabe that i want to be ! ! !

    i gaveup work one and half years ago as i was made to feel guilty about having time off and i decided that enough was enough, i was trying to fight everyone and couldnt do it anymore. i was signed off for aboutsix months with depression before i left but by then i was ready to admit that i was that bad -

    but i am so muchbetter now.

    being off gives me the freedom to take time to get ready and try and to do couple of things indoors but i can decide when is the best time for me. financiallyit was a worry but we have coped and i dont hate everyone and everything quite so much - well not all time time anyway! ! !

    cheers from beachbabe xxxxxxxxxxx

  • Hi Joanne

    I hope you feel a bit better today, its just awful isn't it, hope the steroids have started to kick in. I too am starting to think that i may need help re depression as well. (as though we don't have enough bloody medication to take).

    I have been off metx for about 4 months and last month i saw a big increase in hair loss - very disturbing, wasn't on any dmard then so wasn't sure why it was happening.

    Work issue is so hard - i fear most do as little as possible and I have had to really push myself hard to keep going in as i knew the slightest excuse .........

    Anyway do hope you feel better and life is a bit brighter today.

You may also like...