dermatology recommendations/advice

[Tonkie]

After 6 weeks off my methotrexate due to family commitments, then 7 weeks of infections.. I restarted and have had awful reactions with my hands. They’re blistering every other day just if they get a bit warm. Rheumatology has now said I can’t take methotrexate until it has cleared but it’s just getting worse. My GP has been trying for 2 weeks to send a referral to Dermatology but they’re full every time she tries (I’ve been asked to ask again today but not heard back)

I’m at the end of my tether. I’m so sore, itchy and in pain. My joints are swelling and I’m struggling very badly off the medication. I’ve had enough. Can anyone recommend a dermatologist I can go and see to help me? Preferably in the Manchester area. Someone who does biopsies would be great too as I have other rashes on my legs and arms.

If you know of anyone who I can pay privately and then also does NHS would be amazing. My head is foggy, I’m wading through treacle and I just want some relief now.

[loopy-lou]

Hi, I am so sorry to hear of your suffering. I really feel for you. I have recently been seen at The Nuffield Hospital privately who have immediately transferred me to their NHS hospital list as I don't have private health insurance. I am not in the Manchester area but I would imagine The Nuffield do the same in all areas. I looked up who I wanted to see and rang their secretary and got an appointment quite quickly. It may be worth giving them a call to see if they can do the same. I didn't need a letter from my GP but they sent a report to him afterwards. Good luck x

[Tonkie in reply to loopy-lou]

Thankyou I’m ringing them now. Thankyou so much. What did they do if you don’t mind me asking? X

[loopy-lou in reply to Tonkie]

I chose a rheumatologist as my original one has left the hospital and I haven't had an appointment in such a long time and difficult to get a new quick appointment. I have had SLE for approximately 17 years . It has never been well controlled and I have so many issues going on. I had an appointment for about 45-60 minutes. I took in photos, a repeat prescription and emailed his secretary in advance with the main issues I wanted to discuss. I took a copy on the day too.He has written to my GP with a list of blood tests so I can get these done at my surgery. He has requested my GP arrange appointments with dermatology ( I get all sorts of odd rashes) and an x- ray of my hands at the hospital. This was only last week . Plus he has requested a scan of my salivary glands - Sjogrens. That apparently cannot be done at the hospital. It makes me wonder what they do instead!? He seemed to focus more on Fibromyalgia which I could have told him. He hasn't as yet given me any new medication until he gets the blood results back.

He asked if I wanted the follow up appointment in 6 weeks to be at The Nuffield or the hospital. He has told me I am now on his NHS list. I suggest you take someone with you if possible as I still forgot a couple of things. Good luck, I hope you have the same success x

[posthinking01]

Hi there - as a Lupus sufferer who suffered with awful skin issues = can I ask what other drugs you are taking ? Are you on steroids - have you had your thyroid checked - do you drink alcohol and how and where do the rashes present - i.e. hands arms palms etc.

[posthinking01]

Hi there I am a Lupus sufferer and suffered with my hands - are you on any other drugs ?

[TJB59]

Hi Tonkie i know exactly what your going through if its for psoriasis , the hospital they first sent me to was a batty old nurse that was so close to retirement she didn't actually care . My psoriasis was all down by my bits and bobs and the all over my bottom and all over my thighs, she told me to put that horrible cream stuff all over it .amd as the hospital i was going to was a bit out of the way i asked if she could transfer me to another hospital . She said to me is the best thing to do is me to discharge you and then you can go to another hospital which was a lye .she didn't tell me i would have to go back to my doctors and be referred to another hospital . SO my doctor fair play to him tried to get me into my local hospital .the only problem there was they hadn't got any dermatologists at all .but if did manage to get me into another hospital which was even further away that the one i had been going to anyway .because it was getting Even worse i would have gone anywhere really . SO i was booked into a hospital an hour and half away from where i live .so i get the you see the nurse first she does the usual name .address, hight and weight .and then there questions she asks is what is the problem can you tell me a bit about it so i drop my short and no word of a lye she said f### he'll how long has it been like that and said I've been a nurse specialist for 12 years and I've never seen anything that bad before .she then said could you wait a bit please i want the consultant to see this and he asked me what they have given me at the other hospital and gave him a tube of what i had been using he said that's the most ridiculous thing I've ever heard. If tells the nurse to put me on methotrexate and fair enough it started getting better but i was having blood tests every week .then every two weeks . Then they rang me up amd and told me to stop taking the methotrexate because my bloods where not good .use methotrexate had started interfering with my liver and kidneys .so i did what i was told .then a week later i was in the hospital seeing the nurse specialist and she said it was a good thing that the methotrexate had started giving me problems because the only thing that was left for them to try is biological medication infections. Which they wanted to put me on from the start only because the nhs will now I've jumped through these hoops pay for my biological medication which costs £13.500.00 per year .then two weeks later a nurse came to my home to show me how to do the injections .the 4 weeks later she comes again to watch you self inject just so they know you can do it .then every 8 weeks the injections are delivered to you a week before you need it . It must be kept in the fridge but it's absolutely fantastic touch wood .my psoriasis cleared up completely .as I'n gone.it's fantastic .so now i injections the biological medication and it's stays away .OK I've got to take injections every 8 weeks for my psoriasis but it's definitely worth it 100% . It doesn't hurt at all when you inject .and if you don't like needles g you'll suggest you get used to it .you'll never look back . I did have to go out of my nhs area but i don't care .its worth it . Methotrexate is not a good drug to be on its called jumping through nhs hoops .if you could have tolerated the methotrexate they would have left you no that .but after talking to my nurse specialist she said that there are not many people that can take methotrexate for many reasons. My psoriasis was horrendous it only started when i was 55 years old .I've never had any type of skin problems it just started .no one knows why . But if they offer you the biological medication i would bite there hands off I've now been on the injections for 5 years and I've been psoriasis free all that time. I hope they manage to sort you out i know what it's like when they say use this cream it's ridiculous. Have the injections when they offer them to you amd good luck i hope this helps a bit cheers Tim.