Urgent attention - rheumatologist

[SlandTR]

Hi Ive been suffering rashes for years and was being treated with Plaquenil. But whereas the rash only was limited to my feet, over the last 18 months the rash has been more sever on feet , calves and this year, travelling up as high as my butt and thigh. After long haul flights .. the rash is horrendous and my feet swell up. Following a recent flight home from Asia, I immediately went to the surgery so the doctor could see just how bad it was. The GP was totally unhelpful and disinterested. She wouldn't prescribe me any medication and forgot to send me for bloods. She did refer me ..but I received that letter a week later and it was a 10 week wait. I don't have that time available .. I work abroad and I need medicine and tests ..like now ! I am due back to work in a few weeks ..and I am dreading the flight and the two-three weeks of feeling totally fatigued. Can anyone help ? I am willing to go private if I can get seen in time. .I desperate for medication and help. Thanks in advance

[Lone-wolf]

First and foremost, I would suggest that you go immediately to A&E at your local general hospital for the doctors there to examine your legs and possibly carry out blood and other tests to determine the cause. I am concerned that you have both the rash and oedema which would suggest a venal problem and with the fact that your feet swell up after long haul flights. I would ask you if you wear compression stockings and do exercises during the flights to ensure circulation is maintained to your legs? Both my wife (cardiac condition) and myself (Rheumatoid vasculitis condition) do so when we fly to Australia which for us is a 24hr flight.

[SlandTR in reply to Lone-wolf]

Hi ,,thanks for the message. I have worn compression socks before but not on this last flight. They have worked some times ..not others. I do ask for aisles seats so I can keep walking up and down to the plane. On this last flight, they went so tight, red, itchy and I could barely get my shoes back on when I landed.

I was so appalled at the GPs reaction .. how can they not treat me? My feet are in a right state now with scarring under the skin.. brownish patches..from all the times I have had flare ups and not had the right meds, I think. I don't want the scarring to go right up my body ..but even after three weeks of being home I can see the spots. Today, across my feet they have been red and itchy again. I still had some Plaquenil which I got on holiday and keep taking that and some Piritin when it dies down.

Are they obliged to see me at A& E these days.. if I just turn up ?? I thought about doing that after the GP dismissed me.. but then after a few days it had gone down quite a bit and I just feel like they wouldn't take me seriously at A&E .. So tired of this ..Thanks again.

[SlandTR in reply to SlandTR]

Also forgot to mention, when I had the last episode back in March .. when I was home again.. I saw a doctor who also said he couldn't give me any meds until I saw a rheumatologist. The same thing from a nurse at a 'drop in ' centre. I don't know how thy can do that ? Seeing someone in pain, distressed and obviously rashed to the hilt .. and no meds.. Again, I had to leave for my teaching job in a week or so .. so I couldn't get to see the rheumatologist.. Also, they reminded me that if I was out of the country for more than three months I would be removed from their register...and would have to reapply. The GP that time did remember to send me for bloods though ! He also got me a printout of results prepared for me to take away.. and tried to get an earlier appt at the hospital for the rheumatologist ..but no luck.

[Mullany]

I’ve had this problem over the last year a lot worse when flying was referred to dermatologist after a very bad bout after flying back from USA. Swollen ankles purple rash from waist down fatigue was of work for5weeks she prescribed a drug called colchicine used for gout I took this for a few months and I flew to Mexico this year to my relief no rash or swollen feet no fatigue .i don’t know if this is any help .good luck .

[SlandTR in reply to Mullany]

Hi ..thanks for the reply. So glad you had some success with the dermatologist and you can fly without any problems now After reading up about gout , I was surprised to see its connection to autoimmune diseases...but then its a wide spectrum .. covering dermatology and rheumatology. The pictures of gout on the internet don't much resemble this rashalthough I can relate to the purple patches you mentioned. I have noted the medicine you were given and will check this out . Thanks again and I hope you continue to have no more problems on flights.

[Paprika60]

It sounds like you may have Urticarial Vasculitis and you are having a bad vasculitis attack. When I last had an attack, A&E had to prescribe high dosage steroids tapering down every week. That is the only medication that will help right away and buy you time to sort out the right medicine for the long term. GPs do not know anything in depth. They are there to detect and refer you to a specialist. Tragic that NHS takes so long. So if you need immediate action, you need to go to A&E pronto!!! Hope you get help asap.

Of course, you can also try the private clinic but often it does not mean right away and you still have to wait nearly a week to get an appointment. I know exactly what you are going through and it is very upsetting to put it mildly when you have to sit and wait for 6 hours to see someone at A&E but there is no other way. Go to A&E. GOOD LUCK!!

[Suzym2u Moderator Vasculitis UK]

Perhaps contact the VUK helpline and see if they can help with some inforamation vasculitis.org.uk/helpline