Back Into Hell

[Fred]

My new Derm has not discussed anything in depth with me at all. I will be back in clinic on the 19th and I want to compile a list of questions. Any input would be appreciated.

1. You have a rubbish Dermatologist, ask to see one who does their job correctly.
   
2. Are you still smoking? it's bad for PPP.
   
3. Reduce the stress and worry, it's bad for PPP.
   
4. I don't see why he thinks methotrexate will be any better if he wants to stop ciclosporin, but it sounds like a protocol thing to me (oh and a rubbish derm)
   
5. You could ask about Fumaderm, I'm not sure if it will work for PPP but you have nothing to loose and it's better for your body than methotrexate or ciclosporin.
   
6. I don't think they will try the Bio treatments as although they can be effective unfortunately they can induce palmoplantar pustulosis as a side effect, so I would imagine that rout would be the very last option.
   
7. Pile it on at your appointment and make it clear that you are not happy, it's ruining your life and you don't feel you are getting the right help. Ask to see another dermatologist for a second opinion, you need to be firm it's your body and it sounds like you are just being fobbed off.
   

Here is a little piece from British Association of Dermatologists about using Bio's

Quote:

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There are two disabling and difficult-to-treat conditions affecting the hands and feet in which localized pustules are associated with psoriasis elsewhere on the body.

The more common of these, chronic palmoplantar pustulosis, has in the past been termed chronic palmoplantar pustular psoriasis. There is, however, evidence to suggest that, although it is associated with psoriasis in up to about 20% of cases, it is a distinct disease with a different clinical and genetic profile.

This evidence is strengthened by the almost complete lack of reports of benefit from TNF antagonists but, conversely, an increasing number of reports of newonset palmoplantar pustulosis in patients with conditions other than psoriasis treated with these agents.

A recent small pilot study found no benefit over placebo of etanercept 50 mg given twice weekly for 12 weeks. TNF antagonists
should therefore be avoided in these patients.

The second condition is acropustulosis (acrodermatitis continua) of Hallopeau. Although uncommon, acropustulosis can result in considerable morbidity from an intense pustular inflammation centred around the terminal phalanges and often sufficiently severe to destroy the nail plate. It is commonly associated with a destructive arthritis of adjacent joints. It is recognized that patients with acropustulosis are at risk of developing generalized pustular psoriasis.

There are no controlled trials of interventions for acropustulosis. It is frequently unresponsive to conventional systemic antipsoriatic agents. There are now at least 10 case reports of significant benefit from TNF antagonists (etanercept, infliximab and adalimumab) for this rare but disabling condition.

This contrasts with only two reports of failure to respond and, in one of those cases, the patient subsequently responded to a different TNF antagonist. If acropustulosis has a major impact on quality of life, it is therefore reasonable to recommend a trial of one of these agents.

Also cop a read of this: NICE issues new guidance for GPs treating psoriasis

Brighteyes I would say get ready for battle, go in there and give em hell and demand to get your life back.

I wish I was nearer I would come with you, Good luck.

[Brighteyes]

Thanks to everyone for their input.
Be assured that I am writing a long list of questions to take with me tomorrow.
I'm so angry with myself for being a pushover with this new dermatologist.
I want my life back.

BTW.....You are all awesome.

[Kat]

Caroline has given you some good ideas on questions. I have to admit that I am really bad at not questioning doctors as much as I should.

I hope your derm has some answers for you tomorrow!!

[Brighteyes]

Total anti-climax!
Managed to get to the hospital via patient transport only to find my appointment was with the Dermatology nurse NOT the consultant.
I opened my list of questions and dived in.
She showed me my blood scores and explained about 'parameters'. I could actually see that my scores have been quite erratic lately ( or 'up and down like a brides nightie' as my Gran used to say). This contrasted with my latest blood results on the test dose of MTX I took last week which came back all within normal limits.
I asked about the rationale for pulling me off Cyclosporine and was told that the Consultant wanted to " give my kidneys a rest".
I asked about why MTX and not 3rd line treatment (i.e Fumaderm ) but she could not answer. I feel by her response that perhaps she had thought the same but was powerless to override a Consultant.
She did however take all my question down in detail to give him ( he was not available yesterday ).
I really did lay it on about the effect it was having on me physically, psychologically and socially. She is notifying relevant departments and also podiatry and has ordered a lung function test.
I feel stuck as my next appointment is March 24th and I am supposed to take 10mg of MTX today. Not sure if I can hold off whilst I wait for answers as I am in agony and need to do something I don't even know if and what pain relief I can take either as she didn't know the answer to that either.
I have some Tramadol I was prescribed for when I trapped a nerve in my neck and I have looked in depth at it's reactions with MTX and found it is commonly used in tandem for PSA. Should I risk it just for some relief at night???
I'm really getting in a bloody mess again here!!!
Only good news is that my GP has unquestionably signed me off sick for the foreseeable and I noticed on my pay slip yesterday that I had been given sick pay. We have also been advised that we will get help towards our rent ( PHEW !) and my O/H has an interview for a full time job at the local council next week.

[Fred]

Well I could be wrong but I don't think methotrexate is going to give your kidney's a rest, so I still don't get that answer.

She won't be able to answer you question about Fumaderm as she is only the lackey, I'm not knocking her as she does sound like she is trying, but you really should be seeing the organ grinder in your state and not keep getting fobbed off.

I couldn't find anything to say you couldn't take Tramadol whilst on Methotrexate, but obviously it's your choice if you want to take it without asking. (If it helps in your decision I would if i was you, but I would keep it to the minimum)

So are they starting you on 10mg once a week and then reviewing it after a set time?

Also Dave put me onto this have they given you folic to take, my dermatologist did.

At least the financial worries have been lifted that will help.

[Brighteyes]

I figured that they gave me Tramadol whilst I was on Cyclosporine and I had no adverse effects. In fact, it did the job nicely.
It is so frustrating. :( I never even knew I was getting a new Consultant and I don't feel he has made any time to get to know me. I'm a long term patient so maybe my extensive notes overwhelmed him.

So I get 10mg of MTX a week and, yes, I do have folic acid.


One thing I don't think I mentioned is that I was sent for a chest X ray back before Xmas and it was discovered that I had had TB as a youngster. I was never told this ( although, given my family, I am not surprised ). I then had to be tested to see if it was coming back as I had 3 of 4 'symptoms'. Turns out everything was fine but it did give me a hell of a shock.

[Caroline]

Whow Brighteyes you are really going through a roller coaster of disappointments and being pushed to the side path, I am so sorry that this is happening to you.

Is there an option to go talk to your GP and ask him and explain him the situation and talk about a different dermatologist ?
I do not have the impression that this one is going for your health and is personally a good adviser for you. his mentioning of giving your kidneys a rest and than giving you MTX is strange.
Fumaderm would be the medication that would give your kidneys a rest.......

Did I pick up right that the nurse told you that your blood parameters were not so good and fluctuating? Did you take them with you? They are yours you know.

Hope that you can keep yourself together a bit.

[Kat]

She showed me my blood scores and explained about 'parameters'. I could actually see that my scores have been quite erratic lately ( or 'up and down like a brides nightie' as my Gran used to say). This contrasted with my latest blood results on the test dose of MTX I took last week which came back all within normal limits.

On the blood scores (prior to your test dose of MTX) was that while on another med? Just wondering if that is why you were switched. I'm not sure how it all works as I've not been on the treatments you mention, but noticed that your latest results after your test dose of MTX was normal so just wondered about the connections to your previous meds.


I hope your other half has good success with the interview! You sure could use some good news.

[Fred]

@Brighteyes As you had TB when a child that would probably knock the Bio's on the head I'm afraid, so you may as well forget that as an option.

I found Tramadol and plenty of Merlot helped my trapped nerve immensely.  

*PC Statement one should not try the above, it's not a good idea according to the fun police.

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@Caroline I'm not 100% sure, but I don't think you ever get given your blood results to take away in the UK. Crazy I know but that's how it was when I left the UK, maybe others can confirm.

Here they are classed as your property as are x-rays and scans, the patient gets a copy and two more go out. 1 to the specialist treating you and one to your GP for future reference.

[Caroline]

@Brighteyes As you had TB when a child that would probably knock the Bio's on the head I'm afraid, so you may as well forget that as an option.

I found Tramadol and plenty of Merlot helped my trapped nerve immensely.  

*PC Statement one should not try the above, it's not a good idea according to the fun police.

---

@Caroline I'm not 100% sure, but I don't think you ever get given your blood results to take away in the UK. Crazy I know but that's how it was when I left the UK, maybe others can confirm.

Here they are classed as your property as are x-rays and scans, the patient gets a copy and two more go out. 1 to the specialist treating you and one to your GP for future reference.

Possible that it is so in the UK, but it is very strange. It is information on your body, from your name there is paid for it. You can at least confront them, or perhaps go into a discussion that you need it for yourself to help yourself and to add to your treatment. Seeing the parameters, you can more easily project it to the way you have lived in between measurements. Make a lot of sense.

Guess France and Holland are more grown up than the UK. (Probably Cameron's fault... )