Methotrexate

Thank-you so much for your reply Robert, I will be keeping everything crossed that I am lucky and it works, well my pain hasn't got worse up to now anyway, so fingers crossed  

Just keep an eye on it and make sure you have the blood tests done, my doctors will not issue the next lot until I have had the test as some of the side effects can be very dangerous. good luck 

I sure will, my next appointment is on the 17th and am having a blood test before my appointment, the nurses there are so nice and explained everything to me, so feel very possitive

Hi Robert,

glad you are still posting and i echo the good advice you have given re blood tests (I had methotrexate induced hepatitis in 2012 - it's rare!!!!). Stelara doesn't appear to be working yet, a decision will be reached in July whether to continue. My rheumatologist has started talking about adding Humira back into the mix but who knows,there may not be funding. Take care, sheila x

My dosage is being  increased to 20mg at the moment im on 17.5 mg for another two weeks then to 20mg, My reumy has said if this does not work he is considering putting me on Embrel. I am having an injection into my middle knuckle on my middle right finger this Thursday (i have what is known as Swan Finger) and am booked for injections into my heals on 8th June for Plantist (policemans heel) no im not a copper lol. 

Hi Robert,

whilst on Enbrel I had the worst ever flare of Palmo Plantar Pustulosis which led to a change to Humira. You have my best wishes for the cortistero7d injections - ouch! But the benefits far outweigh the pain of injections, at least that's what I've found☺

not looking forward to the injection I wont lie. Was considering not going for it tbh. but the same thing is starting on my left hand now too. Gripping is a big issue with my right hand and as it looks like the left is starting to follow i have to do some thing. Hopefully the increase in Methortrexate works and I dont need to go onto Embrel just a case of waiting to find out if it works now. I have been waiting since September last year for this injection.

Oh Robert, that's awful to wait for so long. Have you had a corticosteroid injection before? Honestly it's not bad because they numb the area with local 1st. When the local wears off, you are left will a dull ache - nothing we ccan't cope with! Here's one to make you wince - 2 weeks ago I had my big toe nail removed due to psoriatic nail disease, local injected between the toes! Oh oh oh😨. Suffice to tell you that my eyes watered a bit.........!! Hope you are benefiting with this glorious sunshine!! Best wishes from your pal, Sheila x

Hi Sheila yes had one before i think it was that in my rear nearly hit the roof it bloody hurt i know that. I also have psoratic nails but not that it really effects me so not planning on having that done anytime soon. My reumy did suggest i move abroad i asked if the NHS would pay for it lol. Oh and im needle fobic too lol so even more reason im not looking forward to it.  Dont think the weather has made much difference so far the pain is a little less than normal. 

Robert, the curious thing is that these past 2 days have been full of sunshine and very warm and my knees have blown up with fluid and are really painful. It is odd. And the last 2 holidays I've been on, fortnight each time, the psoriasis side of the illness has flared up dreadfully, there's no working it out. Good luck with the injs. Hopefully they will help - they will help! X

Hi Shelia. I am so sorry that the Stelara hasnt started working for you!!! What a shame. How have you been getting on?

Hi Lainey,

good to hear from you. Yes, unfortunately PsA is still very active, I've had some challenging times recently. I don't know if Stelara is working or not, I had a particularly bad flare recently which required a Methylpredisnolone infusion and I've been taking Pred orally since Nov, initially 7.5mg daily now 15mg. My rheumatologist is going to decide on what treatment plan comes next in July. He has mentioned the possibility of 2 anti TNFs, Stelara and Humira. There is an oral medication called Apremilast which he thinks would work for me. Unfortunately, it's not available in England but is in Scotland and Wales. How are you? How is the new job going? I know for sure that I won't be fit for work until PsA is under control but on the plus side, my skin has been clear since commencing Stelara so it is obviously doing good there!

Hi Sheila. 

It sounds like you have been having an awful time. You have been on steroids for a very long time now havent you. Do you think they are helping at all? I cant believe how many different kinds of medication there are! Its very positive that your skin is clear though! That must be a good feeling. 

I have lost my job! I didnt get the chance to be redeployed. I am still off sick and unable to walk very far (even with a stick). I have gone past the amount of time I was allowed at work to get re-deployed. They have been lovely though and its all been done amicably. 

I was taken off methotrexate as my ALT levels went up to 233. I saw a new consultant in January and he wouldnt prescribe me any meds, as he said I didnt look acutely ill. He wouldnt take any notice of my previous notes and said he didnt follow the CASPAR criteria, which is used to help diagnose (I scored 5 in this)! He also took no notice of my HLA-B27 positive test as in his homeland of Sweden, this is not an issue. My doctor complained on my behalf and two weeks later my nurse called to say I was going on Sulfasazline. Three weeks later I rang to see where my meds were and the nurse said my consultant had changed his mind and was now putting me back on Methotrexate. My doctor complained again. The consultant insisted that my liver function would be fine on methotrexate and said the prescription would be sent out the next day. Seven weeks later - still no meds!!! I wrote a very long complaint to the hospital and had a meeting last week with them. The consultant made a complete idiot of himself and kept contradicting himself. The nurse said the consultant told her not to send out the prescription.I am waiting to hear from the complaints department to find out what they are going to do next. I am upset, as if they had sorted out the meds when I first went to see the consultant, I would have probably been well enough to get re-depolyed. Thankfully I am going to see a new consultant this Thursday. I am hoping I get somewhere with this one!! x

Hi Sheila and Lainey 

Hope you are both well, So the increase in the MTX has not worked as well as I or the Specialist would of hope, So We have now made the decision to go on to the next step Embrel today, I have had the blood test and xray in preparation for it, They are applying for the funding so hopefully within the next 6 weeks I should be taking my first dose, fingers crossed it works for me, they have said that after 12 weeks of using it they will review how it is going. I did have the injection in my finger a while back but only had the one injection but refused the second which he wanted to do at the same time the pain was too much for me and being needle fobic didnt help either needless to say i wont be having that again. My finger on my left hand is no better and is heading the same way as the swan neck finger on my right hand now. 

I will keep in touch and let you both know how things go forward. 

 

I would send a letter to the bma as well hit him from both sides he's not in Sweden now hes working for the nhs and should be following there rules not is own sorry to I jack this carol,from this you can see what we sometimes have to go though to get our treatment right