Hi looking for advice please.Two weeks ago I was put on 20mg Methatrexate for Sjorgens syndrome but really had a bad reaction. Spoke to the pharmacist and she sent me iff to the GP as she said I was suffering Methatrexate toxicity, so i did not take the next weekly dose, got an appointnent to see rheumatologist in April.
I have been told about another drug hydroxychloroquine, would this one be better according to anyones experience? Or any other advice....I am new to this all ...since July 2023.
I have only been taking prednesolone and busy decreasing dosage, was on 60mg because of GCA, I am down to 30mg
Thank you in advance of the experience of this group.
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Den73
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Sorry to hear you've had a bad reaction I hope your symptoms have settled now.
I was initially put on hydroxychloroquine twice daily which was reduced to once a day. It worked extremely well for me at the higher dose and I would say its great. I now have both hydroxychloroquine and methotrexate but I've had no side effects really from either!
I hope yhe hydroxychloroquine works for you! Keep us posted xx
Am also on both hydroxychloroquine & methotrexate am so sorry to hear you’ve had a bad reaction to methotrexate. I know you have an appointment in April however if I was you I would contact your rheumatologist as they will be able to give you advice on this till you see them on April. I’ve not been on Methotrexate very long as only been diagnosed with Lupas at the end of 2022thankfully I’ve been fine with it. However I’ve been on hydroxychloroquine twice a day for a long time for Sjorgens syndrome and luckily this has worked for me so hopefully you’ll be moved onto this and it works for you xx
Hi Murph17My rheumatologist is very difficult to talk to outside an appointment I am surprised he is seeing me on the 10th! My GP sent urgent email that took him 3 weeks to respond to with the appointment for the 10th.....your comments so encouraging about the relieving if symptoms of Sjorgens because that's the big problem, I will however try contact him and hope for the best.
What i normally do is just phone & explain things to his secretary & she passes on my concerns and then she comes back to me with what the consultant advise. However the 10th is a very quick appointment. My doctor also prescribes eye drops for night & day with a non harsh shower wash as well hope this helps xxxx
Thank you Murp17 I will give the secretary a call this morning...I am on eye drops night and day, some days it helps others not.Thank you for your advice xx
No problem. I had a eye appointment a few weeks ago and the optometrist gave me drops to try as my eyes were extremely dry & these are fantastic they are called Carbomer ask if you can be given these drops xx
I’m sorry you had a bad reaction I did too but yes hydroxychloroquine is the same thing I am using now and I have been on it since 2016 with no problems . I hope this works for you.
Thank you Denise1219 certainly will request hydroxychloroquine when I see rheumatologist on 10th April . Really appreciate your comments and others I have received.
I was started on Methotrexate injections in October for my SLE and started with 15mg. After 2nd dose I had really nasty side effects so I asked if I could try a lower dose. I was put on 10mg and have been tolerating it very well and it has also allowed me to reduce my Pred to 5mg now and hopefully off it altogether over the next few months without my Lupus rash flaring. 🤞 I’m also on Hydroxychloroquine but can only get on with the Zentiva brand which is much kinder to my stomach. Wishing you luck with your meds and that you find a dose and combination that works well for you. xx
Thank you so much Spotty-ewe and for the tip on the brand as my digestive system is very sensitive I will ask gor that brand and also the liwet fose.Really appreciate the comments.
I'm surprised according to my Rheumatologist hydroxychloroquine is the first line of defence as its much kinder than methotrexate. My rheumy would only progress to methotrexate if hydroxy seems to no longer be working well enough in suppressing inflammation. You should have been on hydroxy first by all accounts. I have lupus and sjogrens and go to a lupus centre of excellence to see a rheumatologist. Luckily it's local for me but the treatment has been so good in terms of helpline I can ring any time which replies inw4 hours, appointments every 6 months, physio and other support services, all NHS. If only there were more centres throughout the country for everyone it's frustrating the different levels of care we all get there's no consistency.
I think he is the sort that likes to think he knows best, but this time if he does not gi eme a hearing ear I will insist on amother rheumatologist who will, its unbelievable he takes no notice of my thoughts at all,
Thank you for your comments they have certainly helped me to stand my ground, whenever I get to speak to him.
Definitely. Unfortunately it's a constant battle to get good care and we have to do our own research to keep up to date as often the consultants don't. I've had poor care but since I moved area I've struck lucky.
Royal National Hospital for Rheumatic Diseases Bath. I did have an excellent Rheumy in Swindon too (Sjogrens Expert) but Bath gave me a whole package of care and has been assessed by Lupus UK as a centre of excellence.
Thats what I am looking for Sjorgens expert,but do you have to attend in the region you live? I live in the west Midlands, hence I attend Nuffueld in Oxfordshire
You do not have to attend a local hospital but it makes things easier. If you are paying privately for a second opinion say then you can go wherever you like. I paid privately at first and saw one of the top sjogrens experts in the country at swindon hospital (Dr Elizabeth Price). I was lucky as this hospital is not far from me. She did tell me that among her private patients there are some come from way up north (yorkshire area etc.) to see her. I was not disappointed and she did not cost a lot. Roughly £150 for about 45 minutes. I got my diagnosis of sjogrens with her (despite having negative bloods) and Lupus because of a dsdna positive result. She looks at symptoms too and is not put off by negative bloods. She is definitely up to date on all the latest treatments and medications. You will find that many rheumatologists do not specialise in connective tissue disorders and have little interest or understanding in the conditions. It makes the world of difference to see an expert in this field.
I just looked it up and of the 10+ Lupus centres of excellence around the country you have two centres in Birmingham nearer you maybe under two consultants - Professor Caroline Gordon, based at City Hospital and Doctor Ben Rhodes, at the Queen Elizabeth Hospital. You should find that its not just lupus but other autoimmune conditions that they are expert in treating. Have a bit of research and see what you can find out.
I moved from South London a few years ago and did not realise I had another great hospital on my doorstep with St. Georges, Tooting I went to Croydon and it was hopeless.
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