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An update after taking steroids (prednisolone) for 2 months (I started late because I wanted to get my autumn/winter vaccines done first). I’ve seen a definite improvement. The fatigue got better - including the mental fatigue and headaches, I’ve been reading more and buying more books too...

My doctor from the PoTS clinic told me this. She said because conditions like PoTS are a lifelong (chronic) illness, and they don’t recover, so the clinic ends up with too many patients and people don’t get discharged. So can’t continue like that. She said they don’t have the funding for it. She...

@InitialConditions I’m glad that they are aware of the problem (even if the clinics haven’t confirmed). But I’m surprised the clinics haven’t confirmed! they’ve been telling patients for the last 9 months at the hospital that I’ve been at (although because my appointment was late in the year, I...

There’s quite a few posts on the PoTS UK Facebook group - ie of all of us patients who have PoTS! But you’ll have to search by hospital most likely to bring the posts up - then there’s lots of them. I don’t know about the official PoTS UK page. They probably haven’t said/done anything about it...

That’s great to know, especially about the pyridostigime! I’ve had an issue with GPs and pharmacists wanting to have up to date consultant letters every 2 years, to back up their prescription. So I won’t have that soon (unless I go private). I’ll just have to explain the situation to them and...

Sorry, meant that all the clinics I’m aware of in the area of London (which is where most complex/new people are sent for out of area referrals), which don’t force people to exercise and help with medication, are either closed to new referrals or closed for good. I will take out “all”, but from...

The PoTS clinic I go to (the biggest/second biggest in the UK), is closing down and I was notified that next July will be my last appointment. I understand most people at my clinic have already been discharged this year. I said where do I go? They said go to your local cardiology clinic… which...

Yeah, but they seem to have their own definition of what exactly “weakened immune system” means (from their official document): Immunosuppression due to disease or treatment, including patients undergoing chemotherapy leading to immunosuppression, patients undergoing radical radiotherapy, solid...

They have changed the rules this year for the Covid vaccine: it is only for over 75s, those in care homes, and those who are immunocompromised. So if you aren’t in any of those groups, it may likely be why they’ve taken you off the list again. It’s terrible. My mum couldn’t even get it done...

Update: I didn’t get most of my normal side effects to the Covid vaccine this time around - I didn’t get the shivering or feeling flu-ish. But I did just feel generally more unwell & had a bad headache, and when I tried doing my normal stuff on the 2nd or 3rd day, quickly became very unwell. So...

I had my Covid vaccine today - Pfizer. (I decided to keep Covid & flu separate because I can get quite bad reactions to both, even when I have them separately, so worried about doing them both together). With the covid vaccine I usually get a lot of dizziness, vertigo, sweats and shivering, and...

I’m going to get my Covid vaccine next week and then flu vaccine 2 weeks later hopefully. I didn’t want to get them together as I worried they could affect my immune system too much. Anyone here get both done together?

Citizens advice varies widely depending on where you are. Where I used to live, just like 10 miles away from where I am now, it was excellent. Filled in forms for you, made sure you received benefits you’re entitled to, kind, etc. Where I live now - you’re better off not going there, than...

In answer to Q1, it is about date of application, so yes you’ll be classed as an existing claimant Q3, again they should date it from the date of application. It’s not about when you get approved. Because for example, even when approved, they backdate it to the date you actually made the claim...

An update! I decided to get a second opinion and saw another rheumatologist (a lupus specialist). I was really nervous going there as I know my current lupus doctor works in the same building privately, but luckily I didn’t see him! It was an amazing appointment, and it was like night and day...

Thank you @Jonathan Edwards, that is really helpful and gives me a much clearer picture. :)

Yes, that’s what active vs non active means - but they’ve been saying I have non active lupus since the beginning (which they told me means no inflammation, and no need for further treatment), without really any evidence for that. They’ve never done an ultrasound before, or taken notice of my...

Hi, I was diagnosed with “mild lupus” nearly 10 years ago, on the basis of antibodies & rashes (and some other signs, forgot what, might have been mouth ulcers). But the doctor very quickly - within a few months - said I “don’t have active lupus”. This was on the basis of… I don’t know. No...

Ok thanks. Hopefully after that, I’ll just get universal credit approved without a Work capability assessment. I’m already on ESA support group, and have been for many years now.. can anyone else attest to this? Do they still do WCAs even if you’re already in support group?

Is it normal to be asked to attend a “standard identity check” at the job centre after applying for universal credit? I’m currently on ESA support group and have to move over. when I told them I’m mostly housebound and can’t come in and can someone else go in on my behalf, they told me they are...