The fog is clearing

Its been a while since I last posted. I'd like to say its been because I've been really well but unfortunately that's not been the case. I'm currently off mtx because of side effects so I'm a little sore but nothing too bad yet. I'm due to see my specialist nurse on Monday to discuss where we go from here.

In a nutshell I've had the awful hairloss over the past year, terrible fatigue and brain fog. At Christmas I started to get nauseous, puffy eyelids, cough and sore throat. It was like I had a lump in my throat and it hurt to swallow. While all this was going on my thyroid was out of control swinging from too high to too low so its been hard to point the finger at the exact cause of the symptoms.

Anyway after a desperate call to my specialist nurse a couple of weeks ago I was advised to come off mtx to see if it made any difference. Within days of missing my first dose my energy levels increased. Although tired I'm not as bad as before, hence I'm able to catch up on here. The sore throat has cleared up and my eyes feel much better. Unfortunately this leaves me wondering what the next step will be? I remember being terrified of starting mtx but now its like an old friend who has kept the pain away really well.

Deep down I'm hoping I've made a spectacular recovery over the past 2yrs and don't need meds after all but I have a feeling that's just wishful thinking and soon I'll get a sharp reminder of why I do need the drugs. Does this sound familiar to any of you who have also ended up on different drugs?

So now I need to swot up on different treatment options so that when I attend my appointment I at least have some prior knowledge. On the other hand maybe I'll be advised to go back on mtx to see if the symptoms return? I do hate this feeling of helplessness but rather fancy having a bit more hair again :-)

24 Replies

  • I'm on nothing cept painkillers after about 10 years of mtx+infliximab. It's possible that mtx has been masking the osteo. And I do understand about feeling disorientated when treatments are removed

  • Hope you're feeling ok now Cathie? Sometimes you have to wonder if the treatment is worse than the disease but there is also the long term damage to consider when only using pain relief. Will you be having a new drug soon?

  • Hi paulawoo I've tried a few dmards and they helped great with my joints but on the bad side I had no quality of life they wiped me consultant was wondering as to what I coud tolerate as I actually felt the side effects from the drugs were worse than my actual disease...any way after a couple of poorly years with my health up and consultant then tried me on gold injections over Christmas time...I became very weak breathless anemic and spent most days in bloods showed I was having a reaction to the gold they were stopped...I started feeling a lot better been on no drugs but my joints now are in need of something...I had an appointment with my specialist yesterday wasnt 100% certain to try me on a very low dose of lefluomide which discussing the side effects which i understand i may not get any but wasn't a good drug to risk as I have lots of stomach issues...and battle to keep my weight we agreed it wasn't a very good idea to take the step the consultant will have a look at my notes and may want to try me on anti tnf which is injection form...but again it's whether I qualify and if I can tolerate these...I asked the nurse if I could stay off medication altogether and have the odd steriod injection which really helps me and she said no..explained why obviously heart disease etc joint damage...and because I'm sero positive she explained I have the more aggressive form of arthritus which needs controlling now...I'm seeing her again after they have a meeting to find a way to what step I take next...scary really...all we want is something to help us have more good days than bad...this disease has a lot to answer for...I have rambled on alot hope I haven't confused you I seem to confuse doctors hehe let me know how you get on sending hugs Nicola :-) xxx

  • It sounds like you've been having a horrible time of it Nicola. I really hope your rheumatologist can come up with a solution soon as I agree its not a good idea going without any treatment. I also have sero positive ra so like you I worry about the implications to my organs from just letting the inflammation go unchecked. Do keep in touch and let me know how you get on at your next appointment. I'll be keeping my fingers crossed for you x

  • Thank you I will do :-) xxx

  • Hope you soon feel brighter.xxxx

  • Thanks Sylvi. I hope you're feeling brighter too x

  • Hears hoping you feel brighter soon xx

  • Thanks Miss x

  • Hi Paulywoo. I understand how you feel having stopped MTX last August due to hair loss. Didn't realise how tired I felt on the drug until I stopped, and like you my energy levels shot up and I felt much better. My hair has completely recovered now too. I have a choice to make at some point, try MTX again at a lower dose or try hydroxy. Sulfasalazine messed up my white blood cells and caused more hair loss. In the meantime I'm only on prednisolone having been diagnosed with polymyalgia on top of RA. I discussed going back on MTX with my Rheumy as it helped my pain such a lot and I had no stomach problems like many people do, but now my hair's looking good again I'm less keen and might ask to try the hydroxy first when the time comes - my joints are quiet at the moment. I keep thinking maybe the RA has gone away too. I'm dreading starting another DMARD. I've got enough side effects already from the steroids. I'd like to ask if there's anyone out there who retried a DMARD and didn't get the same side effects second time round? Meanwhile all we can do is find out all we can about our options and trust in the experts advice. Good luck, and let us know how you get on. Angela xx

  • Hi Angela, I started off with polymyalgia and then RA. You have my sympathy as you now have muscles as well as joints being attacked! I was on steroids for over 3 years...just off them when everything has come back with a vengeance, lol. Am back on steroids for 2 months only, 10 mg then 5 mg. also on Mtx and sulphasalazine. Feeling 50% better but that's all. Good luck, hug on the way! Anne

  • Hi there Anne. Three years! I can't bear the thought, but I understand this thing burns itself out in its own time. I'm reducing from 15mg to 10 next week which seems pretty steep and worried the pain will come back with a vengeance but my Rheumy seems keen for me to get the dose down so I'm following his instructions. Also hoping the RA doesn't decide to come back at the same time or I'm in trouble. I hate prednisolone - have loads of side effects and I'm driving my poor husband up the wall with my irritable moods and snappiness. Hug on the way for you too and hope you get the other 50% improvement soon. Angela x

  • Thanks, Angela. Really that is all you can do. Presumably you are having regular blood tests foe ESR and CRP inflamation levels. If pain does come back then shout out to GP and rheumy nurse! Anne xx

  • Yes, I saw him last Thursday and he gave me instructions to reduce the steroids down to 7 1/2 mg over the next 4 weeks then see him again and also have blood test, but see him sooner if the pain returns. Keeping my fingers crossed I can get down to this lower level as I understand some of the side effects go when you get below 10mg. Hope you are feeling OK. Angela x

  • Thanks for your message Angela. Can I ask how long it took for you to stop losing hair as I noticed quite a lot still coming out when I showered today? It's a big decision coming off a drug which is helping and like you I found that I was tolerating it very well. My decision was made for me because of the sore throat in the end but I would be over the moon to get some volume back into my thin hair. If I go back onto mtx I'll let you know the outcome but I'll also be interested to hear if anyone else has gone back onto mtx after a break and found they tolerated it better. I don't know anything about polymyalgia I'm afraid but I hope you find a successful treatment soon x

  • Hi there. My Rheumy said my hair would keep shedding for two months after stopping and that was exactly correct. Then I tried sulphasalazine for a few weeks before having to come off it due to the blood test results (the hair loss started again with this dmard then it stopped again) so that obviously prolonged things for me. But I can say that despite the sulpha problem, I stopped MTX on 22nd August and by Christmas I had a lot of regrowth underneath. By the end of January my hairdresser commented that it was well and truly back to normal volume. It's a bit drier than it was but that helps it look even thicker now. So your might see hair in your hands for a while but rest assured it will stop and it will recover. Angela x

  • Thanks Angela, to be honest my hair has been falling out for so long I can't remember what its like to have a normal head of hair. I'm sure before mtx I never got hair tangled in my fingers while shampooing though. It gives me hope to hear your experiences though so thanks for sharing x

  • I'm sure that you know that it is YOUR decision what advice to accept - don't feel helpless. Having a long term condition means that we have to manage ourselves. The rheumy team make suggestions and we think about them and decide for ourselves. Sometimes we need more information (this forum and NRAS is a good place to find it too), but ultimately never feel helpless that you have to follow what is suggested if it feels wrong for you.

  • Thanks for the advice oldtimer. I think I've always been afraid to take control of my illness as I feel the consultant knows best and who am I to question? You're right though, it should be my decision and I need to get better informed so I feel more in control. x

  • Hi Paula - lovely to see you back on here although I am sad that you have been having such a rubbish time of course.

    As you know I stopped taking MTX 6 months ago and, while I would like to say I flourished from then on the opposite was the case. Many of the symptoms I had come off it for have remained an issue - although for me the foul taste 24/7 was the worst and that has gone at least.

    I started out as sero positive - but when tested in August was sero negative. I think the MTX was a fairly aggressive drug for my RA - which I believe to be mild to moderate. I do have other autoimmune issues that have worsened since I came off MTX but my RA is presently being held at bay with Hydroxichloraquine 400mg and I'm delighted. I know this is a milder, less toxic DMARD and I took it with MTX for a year and it made little difference to my ESR or CRP. But after 8 months off it my rheumy agreed to let me try it again on it's own and I really feel it is working and has taken my ESR from 60s to 17 over a few months - with no joint pain or stiffness worth mentioning. I'm hoping it will work its wonders on my very dry eyes, chronic hives and other weird circulation issues too in time.

    I know your RA is probably much more aggressive than mine with your strong sero positive readings and symptoms - but it might be worth researching Hydroxy as it is a significantly less toxic drug and perhaps you could try a combination with this and Sulfa? I was told in November that if my RA gets bad again I'm going to be put forward for Biologics- having tried three DMARDs now. So I'm really hoping my good fortune with Hydroxy lasts or maybe that my RA has gone into spontaneous remission even. Luckily I can just take Hydroxy to no ill effect at all so am happy just to stay on it and not allow curiosity to get the better of me this time round!

    I know you also have Hypothyroidism as I do and I wonder if you have had all your mineral and vitamin levels tested? I'm sure you know this but people with both RA and Hypo/ hyper can find their calcium, vitamin D, folate and B12 levels are also very depleted. I certainly believe that some of these deficiencies were contributing a great deal to my own problems. Since I started AdCal D3 my TSH levels are almost suppressed and my ESR has dropped well under 30 for the first time since my RA started so I do really think that taking the supplement has helped my meds to work much more efficiently and led to a reduction in stiffness and pain and low moods too. Tilda xx

  • Hi Tilda, thanks for the information as its given me lots to think about. I don't know if it's been the hypothyroidism or the ra but the past year has just been a blur and to be honest I've not had the mental capacity to research my illness or meds at all. I feel as if the fog is just starting to lift and I'm once again finding the energy for more than just existing. Unfortunately my memory is still awful and my concentration is poor but there's been a definite improvement.

    How amazing for you to finally see your ESR coming down after all this time. I hope your remission continues as you sound in a much better place now. Did you have the mineral tests done privately or by your GP? Also, I've never heard of AdCalD3, is this something to mention in clinic or did you get it from a pharmacist?

    I'm seeing my specialist nurse this afternoon to discuss things but I'm just so confused by it all right now. Because my thyroid has been both high and low over the past year its just really hard to know if my problems have been down to the mtx or the thyroid. The same could also go for the hairloss. I'm thinking I may have to try mtx again and see if the brain fog and sore throat return but I'll see what she advises. It all feels very overwhelming right now and I'm very aware that my joints are becoming more painful as time passes.

    I'll let you know how it goes this afternoon and I'll look into the mineral issue too. Thanks so much for the advice, you've been a great help.

    Paula x

  • Paula I'm sorry not to have responded sooner but for some reason I haven't been getting the alerts to tell me when someone has responded to a comment?

    I really hope the apt with the rheumy nurse went well and you have a new DMARD to try perhaps? I think I'm right that you have only tried MTX so far? I also really recommend you ask your GP or nurse about mineral and vitamin deficiencies because these are closely linked with thyroid problems and RA and if you are found low in something like B12 it could well be explaining the hair thinning problems and brain fog, lack of energy etc. this would be Pernicous Anaemia which is another type of autoimmune condition that should be easy enough to rectify with regular shots if B12.

    I know we often think that things that obvious would be checked out by doctors but sadly this isn't always the case. Also the folic acid we take with MTX can mask this deficiency and make our levels appear normal. It is a minefield I know! If you haven't been thoroughly checked out already for b12, folate, ferritin, calcium and B12 it really is important that all these are checked out with you feeling as you have been.

    I got them done privately in Edinburgh and then fessed up to my GP who acknowledged (rather defensively!) that my Vit D level and Calcium were too low (bottom end of insufficient bordering defficient at the end of a good long summer!) and prescribed AdCal D3 - 1 per day I wasn't expecting it to make such a difference but it is the only thing I can say has changed and it therefore gets the credit for the corresponding improvement in my health from RA to thyroid. Please do try and look into this - I hate the thought of you being so poorly. Xx

  • Hi Paula don't come on here much these days but just popped in and seen your post so sorry that you are having a hard time lovely ...I was so grateful to you with all your fitness advice etc last year and I am upset to hear you are not doing too good :( . I think after all the probs you've had with Methx ( side effects) that maybe you should stay off it for a while , it's not suiting you and yes it is such a hard decision when the Methx has been helping your joints but it's not the last hope in medication .....maybe coming off means you may flare and suffer inflammation etc your condition maybe then (hopefully not) be bad enough to consider biologics. It's all scarey i know but let me tell you 4 months ago I could hardly walk , had to give up my job etc etc but I'm now 95% the person I was and got my life back since taking Cimzia .. Biologics are considered when you have tried dmards and had problems but hopefully you will not to be too bad and maybe just another dmard will be able to control it and certainly your specialists need to look more closely at the thyroid problem too ...hope you get on ok this afternoon hun it's all such a worry isn't it - take care xxx

  • Hi Claire, lovely to hear from you. I've missed all my friends on here but just didn't have the energy to read posts let alone respond while I was on the mtx. I think this in itself tells me that the drug is not helping me as what use are pain free joints if all I can do is sit staring into space all day? I've had a look at the other available drugs on the NRAS site and will see what is suggested this afternoon. The keep fit has been off the menu the last couple of weeks but I can feel my waistline expanding so must kick myself up the backside and get back into the gym.

    Fantastic news that you're getting on so well with Cimzia. Have you managed to get back to work or are you taking some time out? I find I can manage ok doing 13hrs a week in the shop but could never imagine going back to work full time. I look forward to catching up some more and so glad you're feeling better. x

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