Vasculitis UK
5,454 members5,008 posts

Fed up

Well just got back from dermatology and feeling really annoyed. Skin Dr wants me to take Dapsone so I ask if it was okay as I have Asthma and COPD plus a heart condition. She just brushed it aside and said it was fine, not according to what I've just read. Plus she just brushed away all the other health problems I'm having. Thank goodness I had the foresight to book an appointment with my GP for tomorrow. Dermatology also had me on 180mg Fexofenadine Hydrochloride twice daily (360mg a day) for the past 2yrs which she totally forgot about. I've now thrown the Fexofenadine away as it made no difference what-so-ever. On top of that I had to go for yet another blood test for G6PD as the last one done 3months ago some-how got lost and finally ended up in London and was too old to be tested.

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You couldn't make it up Boudica1. :-(

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I know, the last time I saw her was 2months ago and then she said she didn't need to see me again but sent me off for 6 different blood tests. Today she just brush aside the results as though I didn't need to know. Seeing GP tomorrow and will be showing her a some-what long list of everything thats been happening health wise and asking to be referred to someone who knows about this condition. The skin Dr also seems to think that blood tests and scans can show if the Vasculitis has affected my kidneys, which she say it had not. Even though I often get pain in the kidney area and blood in urine. For some reason the Drs seem fixated on kidney stones when a CT scan, scan and having the indignity of a camera in the bladder have shown the are no stones, lumps or bumps. My poor GP tomorrow will have to sort this mess out other wise if I come away still unhappy I have thought about stopping all meds and see what happens then.

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I'm glad you asked for a referral. She needs a good kick up the pants.

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She seems totally out of her depth and didn't know if she was on her head or bottom. She even mentioned about referring me on but decided against it. Which is why I'm asking the GP to refer me to some one who knows what they're doing as I wouldn't trust dermatology to treat acne going by todays shower.

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Me neither Boudica. Dermatologist told me my rash was Nodular Prurigo, When I showed it my Rheumatologist she said Rheumatoid Vasculitis. I also have RA. Maybe you should ask for a rheumatologist. :-O

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I am going to ask for a Rheumatologist poemsgalore, wanted to a couple of months ago but as skin Dr had requested upteen blood tests both me and my GP didn't want to appear out of line, you know how some hospital Drs can be. I said then to my GP that the skin Dr had 2 months and then I would push for another to take control. Dermatologist had me on twice the recommended dose of antihistamines, maybe thats why she brushed aside the blood results. I also found out by my own research that what she had me on can also have an adverse effect with 2 of the inhalers I have to take for COPD. It appears it can cause problems with the potassium levels in the blood. When she was telling me about some of the side effects to watch out for from Dapsone I told her how am I going to know if its the Dapsone causing it as I have those symptoms already. She just shrugged her shoulders and giggled. How professional is that?

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I am the same way with my RH I am changing RH because I think I know more. Everyone says that the internet is not good but I feel they get there information for internet also and I am my own advocate. I know my I know more than my old Dr.

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They (except nice ones) live in their well-protected babble. They are busy people/professionals but they may not be Dr House! Just another mundane, qualified, but an average guy/lady, who could care less, to put it bluntly. When you see the attitude, you see that as a patient.

This topic often comes up.

Drs (who never took those drugs herself/himself but heard all the wonderful things from pharma reps, one of the nice guys (drs) told me) and patients, who never/rarely get any side effects are usually quite detached from the way "some patients" feel about potentially serious side effects. The whole culture is "great, let's have it or let's give it to her/him" without even thinking about going into "side effects" = negativity/cynical/anxiety-provoking, what have you. But this has to stop as it puts patients life at RISK. Sorry for the cap, but this is so important and awareness needs to be raised, as a matter of urgency. These drugs DO have side effects/toxicity and these need to be properly addressed.

The thing is that they wouldn't be too affected after patients had some serious side effects. They are not gonna be fired. Their wonderful insurance cover, GMC lawyers, their attitude "oh you are such a miserable thing, other patients never had that, oh, you are so unlucky, never heard of that one" etc. That's the sad reality.

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What is needed in the medical world is more humanity , eye contact and better listening skills. It is also a symptom of how little is understood about the various manifestations of vasculitis by specialists . If a doctor is flying blind , he or she has a duty to find someone who does know the multiple manifestations of vasculitis and refer.

The health care system is very fractured , over-specialized, and no one is looking at the patient as a whole.

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Cannot agree more. Also, I see a lot of politics going on in healthcare, too.

I was discharged (without my disagreement) by one highly regarded rheumy in a major city some time ago. I believe he's a good guy (Prof), who knew my "good guy" rheumy (mine left as he had enough of UK HC politics e.g. cutting costs over patient care). Pleasant and friendly. It was funny, he came up with an explanation such and such to make it sound as if he had to discharge me. Later, I chatted with a neuro and explained to him (neuro) as to why I was discharged (not that I cared much). The neuro paused and looked at my face which confirmed my thoughts. I knew the rheumy was giving me some dubious excuse (thought it was funny and I knew that wasn't true, I wasn't exactly so naive). Whilst the neuro didn't say, I could tell he was slightly shocked that Prof came up with a half-baked, non-science/untruth to kick another patient out. Not sure how many times he used the tactic to move patients on from his department. I doubt I was the only one...likely 100th?

These guys deal with V. at the top - at the top hospital. Highly accomplished Drs. But he can come up with a lie/white lie (knowing how nice he seemed to be, he didn't want to offend etc.) Another one at another top hospital with Prof before his name, he hardly knew what V does. I doubt he comes up with any lies, this one was just .. he had no idea. Oh, well. At least, I know I wouldn't return. He can happily check antibodies and work like a lab technician all day. None of my concern. At least, he wrote/co-authored very good research papers with other highly regarded profs and he made his name. In reality, he was nothing like that. He was a very average guy as a Rheumy. If Dr House graduated from Princeton, this other guy must have acquired a fake document. Just a dark sense of humour, but it was a little like that. As a clinician, he was so average.

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Totally agree with you that Drs need to listen and pay closer attention to patients instead of just focusing on their own small bubble. We are not some number on a conveyer belt to be processed, patted on the head, told what to do and take, and if you don't fit what-ever their agenda, next patient please.

Was at the Gps today not my normal Gp I see, to voice my concerns. Well she was honest in saying she has no knowledge in vasculitis of any type and kept asking why I "thought I had urticarial vasculitis". I told her that that was what the Skin clinic diagnosed but she replied "no they did not, they noted it as urticarial". I told them no the dermatologist verbally said urticarial vasculitis and even put it on patient history for all the blood test she sent me on. This Gp I saw today said she would not refer me on but would speak to some-one at who may know what it is. Them basically told me it was my age and that the other problem of pain in the kidney area and blood in urine was a pulled muscle or trapped nerve. So now I trust non of them or their diagnosis for anything, told the GP if its just getting old then there is no need for me to take any of the meds but was told "Oh but you have to as they help". No they don't, 2 years of double the maximum recommended dose has had no effect what-so-ever, so its not an allergy. Even the dermatologist hasn't read their leaflets or they would have known that the drugs they had me on were of no use for urticarial or urticarial vasculitis.

So I'm old, don't know anything and basically go away and don't bother us. Really contemplating stopping all meds, even those for COPS and Asthma and wait to see what happens. A&E or a box or both.

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GPs don't, I entirely agree. I'm nothing against them, personally, but I have been known to be the receiving end of their "medical negligence"/lack of care which you seem to be describing. Usually, this happens when they are trying to "save their cash" to put it bluntly. They do probably want you to go to the nearest E care. I keep hearing the NHS funding is getting much worse. Also, it depends on the area you live. Geographical lottery.

I used to think GPs know what patients are suffering from (naively), but I now admit that they don't. I suspected it but I never expected them to know everything, either. So, there's the certain detachment on my part.

GPs may often miss something important off their "medical condition/diagnosis list". It made me wonder that they have their own internal lists patients cannot see online. I added "often" as it just happens by mistake or lack of understanding over its significance or a number of other reasons e.g. clerical errors/GPs too busy (that's true), she forgot to add which I can't have the strength to raise but generally GPs have no expertise/knowledge/info that we often end up having far more of.

Even "professors" don't seem to know enough in certain aspects, reluctant to gain new/up-to-date facts which cause all sorts of ridiculousness. "Come on, you are supposed to be professional in this medical game!" But their dignified world keeps nicely ticking along without any concern to upgrade their dated information since he graduated from medical school several decades earlier. My V wasn't noted in my GPs diagnosis list when I recently happened to look at the list online. I wasn't too bothered.

Reading what you said, I wondered if they/GPs have a computerised system to put "diagnosis" into the system. If yours "sounded" like a skin condition, they probably put it that way. My diagnosis is clear in several letters but still not listed. I assume that they do not understand the seriousness of the condition and what that may mean as they don't look at you, holistically. They just gather random diagnosis together and don't care if these happened at random or with an underlying pathogenic cause you may have. It's none of their concern. They are just too busy. As patients, we had to learn these things as janewide wisely commented on, but GPs haven't got any clue as to what we are up and against. Sometimes, they do try to help in their own way. Sometimes, they don't.

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I feel it will never end and I feel I know more than my Dr. I think they just guess, I wish I knew how many of us live near coal ash plants, because after being dignosed I found out our well water was contaimated with hexvelant chromium and validiaim and other toxins. I feel if I could have told this to my Dr when became sick they would have found something different. I think Drs need to see about our environment, and where we live by coal ash plants and ponds unlined

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