The next step in my drug journey?

Last week I saw my specialist nurse having been on a break from methotrexate for 3 weeks. I told her my brain fog was much better, tiredness improved and sore throat cleared up. It's a little early to tell if the hairloss is improving but I'm feeling hopeful. So as my esr was only 5 and my hands and wrists were only a little more sore with no swelling or redness she advised I stay off drugs for now and be reviewed in 6 weeks. She suggested I look at the literature on Leflunamide and Sulfasalazine in the meantime.

What a difference a week makes :-( Gradually my hands have become more stiff and painful. The pain radiates from the hand right up each arm to the shoulders. A sharp, burning hot pain accompanied by aching muscles. To top it off the joints on my feet have become steadily more swollen and painful so now I'm crabbing down the stairs and hobbling around with a really attractive limp. This is not good news when attempting to walk the dog or worse still face a 4hr shift on my feet in the shop tomorrow and Thursday.

I've left a message on the helpline to request a call back as I think I need to go back onto medication now rather than give this 6 weeks. I've looked at the alternative drugs and think I may ask to give sulfa a try. Feeling that familiar apprehension that accompanied the initial diagnosis and starting methotrexate. Some say the treatment is worse than the disease but at the moment even the fog of methotrexate and handfulls of hair feel an attractive prospect. I wish it had worked for longer and even find myself wondering if a 2nd try could be useful but I think it's just the fear of the unknown again. So two fingers up to ra, I'm going to do my best to beat you back into submission. I think a nice warm swim this afternoon may help....Damn I need to wait in for my nurse to call back and the message said during busy periods this can take up to 2 days! I do hope today is not a busy period.

Paula x

as a footnote....I'm really fed up of being an angry jack Russell but can't change my picture. The blue bar comes up but then just says my picture viewer failed? Any hints would be very welcome :-)

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18 Replies

  • Hi Paula, it is a very nice angry Jack Russell!! Sorry don't know how to sort that out though.

    I really hope someone gets back to you soon. I so hate that when they say they will get back to you in the next, in mines case, 3 working days. To add to how your feeling, you also feel you have to be permanently available to take the call.

    Just a thought, what dose of mtx you were on and was it ever tolerable for you, or was it always really bad.. Just wondering if a lower dose of mtx with another drug might be better? I'm only saying this as when I saw my consultant the other week and we talked about my options, including adding sulf to the mtx, he said that if I took this option I could reduce the mtx from 20 to 15mg to reduce it's side affects.

    Take care Paula and try and rest until you get that call and I hope someone can sort something for you soon, Rx

  • Hi Rosie, thanks for your advice :-) I was on 15mg of mtx from the start in 2012. I was willing to accept the thin hair, brain fog and fatigue but was advised to come off after getting asthma, cough and sore throat which refused to clear up. It was only once off the drug that I realised just how badly the fatigue had been affecting me. I must admit I'm tempted to try the mtx again to see if the symptoms return but I'll see what the advice is first. We really do have to become experts in these drugs but it's no fun weighing up which horrible side effect we'd prefer to experience. I was actually considering sulfa as I decided diarrhoea and rashes sounded more acceptable than nausea, hairloss and high blood pressure. What a dilemma eh!

  • Hi Paula I think you are doing the right thing starting treatment as soon as possible. If your pain gets really bad you could ask for a steroid injection to tie you over the next few weeks until the Sulphasalazine kicks in. Hopefully they will call you back soon - take care xx

  • Oh sorry to hear this. I've been off mtx for 2 months now and I have dreadful pains. It seems that it acts not only on RA but OA. which is why I have amazing knee pain now.

  • I read about mtx being used for OA recently. I hope you can get some alternative soon Cathie x

  • Thanks I have to wait for magic MRI scan.

  • My docs says sulfa is his second choice and first choice for drinkers if that helps xx im on sulfa x

  • I must admit I do like a tipple but I'm happy to abstain for the good of my health. Two single measures and I'm tipsy nowadays, I'm such a cheap date!

  • Although I know some people do very well on Leflunomide I was a bit worried about my consultant pushing me to take it when I saw him in November because I had read it could cause rashes and hairloss. In the end I mentioned it to my consultant and he said no he thought the chances were too high that it would give me GI problems - as I have a delicate stomach.

    I tried Sulfa first but had a severe reaction although many here take it with no problems at all - so if the pain and swelling returns beyond my feet I'm to start biologic drugs. I've been blithely assuming this is all just pie in the sky over the past few months but for the last four days am feeling stiff and achy with a very sore right ankle joint so I know a bit about how you feel. I'm also so tired all the time it's ridiculous!

    But I think Rosie's suggestion sounds quite sensible and also wonder if you would consider switching to injectable MTX at a lower dose with Sulfa or Hydroxichloraquine perhaps? If you look up DMARD therapies on the NRAS site (as I'm sure you have) you might find a page that explains the thinking behind dual or triple DMARD therapies - which means that some can stay at lower doses of each drug. I know that the switch to injectable MTX was a really good move for me at the time because it became significantly more effective, meaning that I could reduce to 15mg. Might be worth a try perhaps? I hope you heard back from the rheumy nurse and have a plan in place now. Txx

  • Yes Tilda I was put off by the mention of hairloss with leflunomide as I've struggled with this enough over the past two years. My self esteem really couldn't cope with another bout right now.

    When I mentioned injectables in clinic I was dismissed very quickly so I think they're a bit of a non starter. Basically I was told that side effects like hairloss would still occur but I see what you mean about being able to have a lower dose, that makes complete sense. I imagine like everything else it's driven by lack of funds. My clinic is under staffed, under funded and basically you are in and out as quickly as possible. I don't blame the staff as they work very hard but as a patient it feels like a production line where you struggle to have a voice. Now the mtx fog has lifted I'm doing a little more research into alternatives so I'll feel more in control at my next clinic appointment.

    I hope you settle down soon without the need for biologics. Are you still keeping up with your diet and exercise? I've been a bit lazy of late and have given myself a good talking to. As you say though the constant tiredness is a problem and hardly sends me running to the gym. I do know that when I make the effort to exercise I feel a lot stronger both physically and emotionally. x

  • Hi sorry to hear this...wish there was an easy option...I've tried different dmards can't tolerate the side effects....haven't been on any drugs since Christmas...have lots more energy not much pain have more days out...but I know very soon I will have a flare with the stiff aching joints....I'm waiting to see my rheumy to see what happens I've been told from my rheumy I need to be on according to her (which I don't understand) I have the more aggressive arthritus....what ever that means...I'm sero positive....I will ask more questions at my next appointment...I've even been on a two mile walk today...I couldn't have done this been on the dmards...very strange confusing how our systems work....hope you get you phone call and maybe a steriod injection...until your next drug jet to help you out....wishing you luck big hugs Nicola x

  • I know what you mean about having more energy to do things when not on drugs Nicola. Well done on your 2 mile walk! Walking is such good therapy for those who can manage it. I have to walk because of my dogs even when I'm in a flare but at times like this when my feet are so painful I admit its very hard. I have sero positive arthritis too. Although I've read that the prognosis can be worse with sero positive this is not something that has ever been mentioned in my clinic. I think it gave me the push I needed to take extra care of my health and fitness and do more to look after myself though. I hope your good spell continues for a while yet. At least a bit of spring sunshine will help a little x

  • Hi Paula.

    Can give you any hints or suggestions re sulphasalazine. I have used leflonmide for 6 months with metho injection 20mg. No real effects on my joint. But I unfortunate had frequent diarrhoea. Which resulted in me stopping it.

    Good luck with your swim. If you fancy a change of pool you can join me @ mine.

    Sending you Good wishes to get some relief soon.

  • Hi Carole, I hope you're feeling a little better today? I'd love to join you for a swim one of these days and if you're game I'll even join you for another coffee and cake at Gordale :-) I had a wonderful slice of carrot cake there the other week with my Mum.....shhhh don't tell Andy I didn't put it on my calorie counter! Sending you good wishes too x x

  • Hi Paula

    I have only been on pill form of mtx for 3 weeksso I have not I noticed any side effects yet. But I also have not seen much relief from the RA. I was also prescribed Folic acid along w mtx by the RA doc but don't know if that helps w tummy upset but I haven't had any yet. Also taking plaquinel and doxcycycline w the mtx.

    What I wanted to say was I've been taking Biotin for over a yr, suggested by the person who cuts my hair. Started it long before I got RA last Aug and have noticed I loose less hair during washing and it breaks less. Bonus is stronger nails too.

  • Hi Marsha, I was advised to take a vitamin and mineral supplement too by my specialist nurse. I think it was Biotin but unfortunately it had iron in it which gives me constipation.....why does everything ra related have to effect our toilet needs??? I'll dig them out and try again though as my nails are shameful right now. My hairdresser advised I try Nioxin shampoo etc but I admit I shuddered at the price of the stuff. I think my hair has improved a lot since getting my thyroid dose regulated so fingers crossed for now. I hope your new mix of drugs starts to help your joints soon. x

  • Thanks so much for all your replies. Just to update, I spoke to my specialist nurse just after 5pm last night.....thankfully not a 2 day wait! She advised me that a scan has been ordered to see if there's any active inflammation going on before deciding if I need Dmards right now. She said that if there's no inflammation it would just be a case of managing with pain relief. While waiting I'll take regular ibuprofen and paracetamol and hope things don't go wonky like my beautiful swan neck finger! I don't think a steroid jab would be wise right now as I don't want to mask any inflammation before the scan. x x

  • Good luck, the drugs can be harder on your body than the RA, it causes low immune system, colds sores, I have taken injections which I cannot take anymore cause my heart muscles to get weaker... Meotratrate is a good drug but has side effect, and know my hair is thinning,,,, I just pray that they can find something....

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