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Differences In Treatment Between Countries ?


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#1 lizzie

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Posted 10 August 2007 - 02:12 AM

Hi everyone, one thing that has struck me in the short time I've been reading the posts on this forum, is that there seem to be some differences in treatment between the UK and the USA. This perception is of course is based on very limited (excuse the pun) knowledge of treatment in either country! It seems to me that the doctors in the USA are somewhat more proactive in some of their treatment of limited scleroderma , e.g use of Plaquenil. However here in the UK they seem to be more proactive in prevention of vascular problems - I have 5 day Iloprost infusion (prostacyclin) every 3 months, plus at the first sign of anything that could possibly become an ulcer. Is this the case or have I got he wrong impression (v likely!). There may well be great variation in treatment within the UK, Alexandra mentioned the other day that her rheumatologist (also in the UK ) prescribed supplements, whereas mine don't. I know everyone is different, and that treatment depends on a multitude of things, but I would be really interested to know what treatment others have for limited scleroderma both in the USA and anywhere else (just because I'm curious, I'm generally very satisfied with the treatment I receive.)
lizzie

#2 Lillskuzi

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Posted 10 August 2007 - 10:59 PM

Hi Lizzie,

I live in the UK. I had a 5 day Iloprost infusion when I had some infected digital ulcers and my rheumatologist said it is up to me when I want to have another one (infusion, not ulcer!). She said as soon as I think I need it again, I should phone her and she will arrange another 5 day Iloprost course without me having to go and see her first (This is an NHS, not private, rheumatologist)

I wish I had told my general practitioner about my hands last year, as I endured many ulcers last winter before deciding it may be worth mentioning...
Susie

#3 lizzie

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Posted 11 August 2007 - 06:43 AM

Hi Susie, thanks for the reply. So its not just my rheumatologist that is very proactive re preventing ulcers. I did question whether he had shares in the company that makes Iolprost because he is so keen on using it. I have the I/V infusions in addition to a high dose of calcium chanel blockers. Since having both there has been a big diference to my hands plus am convinced that my brain actually works better after as well! It is a bit of a pain having to go into hospital for the 5 days each time, but think it is worthwhile, particularly as it is thought it may also have other beneficial effects.
lizzie

#4 Margaret

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Posted 11 August 2007 - 08:03 AM

Hi Lizzie ,

We are in the States and Gareth was started on Plaquenil on June 1 after almost 8 months of 'not knowing what is going on.' He has no skin issues or Raynauds. He does have mild restrictive lung disease, esophageal dismotility, vocal issues, and extreme fatigue. His blood work is positive for Sclero but it would be sine Scleroderma.....very rare. I think that is why the diagnosis isn't 'solid' and, thus, the conservative treatment.....in his case. Mind you, after reading for months, I don't think there are two people in the forums who have had the same initial onset or progression of the disease. The Plaquenil has done wonders for him.....he's slowly starting to return to his old self. My concern is that the one blood work....the Anti-RNA Polyermerase 1/111 has jumped from 26 to 87 since he has been on the Plaquenil while the sed rate has dropped from 78 to 40. I am not sure the even doctors know what meds to use for each patient and that many are just doing 'trial by error' in treating their pts.

Take care, Everyone.
Margaret

#5 Lillskuzi

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Posted 11 August 2007 - 09:27 AM

Hi Lizzie,

I guess we are pretty lucky to have Iloprost as required because the pharmacist at the hospital who dispensed it every day told me it wasn't particularly cheap, either.

I am glad it has worked so well for you. The condition of the skin on my hands has improved 100 fold. It used to be really dry and cracked all other, but now it looks pretty healthy. Long live the mild weather :-)

Were you able to have it as on out-patient at all? I have asked if it will be possible next time, so I can go home each night, and the rheumatologist wasn't sure, but thought it may be feasible.
Susie

#6 janey

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Posted 11 August 2007 - 10:11 AM

Lizzie,
I do not have any idea why there are differences, but I have noticed it a lot. I've seen from board members that Australia and NZ don't even offer some of the treatments offered in the US.

Speaking strictly in reference to my insurance provider and doctors, they don't allow or prescribe anything that has not been clinical proven for a specific disorder AND (in some cases) approved by the FDA as a treatment for that disorder. I also think in many cases it's what the doctor is use to using. I'm shocked at how many doctors still prescribe high dose prednisone to scleroderma patients.

I'm so glad the Iloprost is working for you.

Big Hugs,
Janey Willis
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#7 lizzie

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Posted 11 August 2007 - 10:43 AM

Hi.
Margaret : v interested (and pleased) to hear that the plaquenil has been good for Gareth. I'm not sure if it is used in the Uk for scleroderma. It does seem to me that in the USA are somewhat more proactive in using disease modifying drugs and immunosupression. My son was on an exchange programme and had a year as intern in Chicago. unfortunately while there he became v ill and was admitted to hospital and diagnosed with autoimmune kidney disease with prognosis of end stage failure within short period of time. Although the doctors said it probably wouldn't work they started him on cellcept (as well as prednisone). He returned to the UK shortly after and the doctors here said that they probably wouldn't have given him cellcept ,but as was already on it it was continued. I'm just so glad he had it because his renal function has stabilised rather than deteriorated so still not on dialysis as predicted and I believe that may well have been due to the cellcept.

Susie: I ususally have the iloprost as a continuous infusion ( 24 hours a day). At the unit where I go even if you have it over a few hours you stil have to stay in for the whole five days, although really can't see why. I have wondered if you could say go in at 5pm and have infusion over night and then go home /to work each day. Think I will ask! They have just started a new protocol - so next time I go I will have it over 3 days but at a higher rate - if I can tolerate it. It is v tedious being in hospital for the whole time, but I take the laptop and work, also the food is not great plus iloprost makes me v nauseated so I loose weight , which for me is a bonus!
lizzie

#8 Clementine

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Posted 11 August 2007 - 11:12 AM

Janey,
Do you remember when Prednisone was quit being used as a treatment for sclero? I used it in 2005 but it was prescribed by a regular rheumatologist, not the specialist I see now.
I was up to 80mgs!!! Ugh.
Jen

#9 jefa

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Posted 11 August 2007 - 10:59 PM

Hi, Lizzie. Yes, I agree that there seems to be a different approach in the UK than in the US. I have lived in the UK for ten years now, but prior to that, I had experience in the US with HMOs and before that with military medical systems. I did a lot of web research throughout my diagnosis (still ongoing) and when I saw the differences, I started looking more specifically for UK sources. I read everything I could get my hands on in terms of protocols and what to expect. There is an organisation in the UK that exists to advise and act as a watchdog for the NHS (National Health Service). NICE (National Institute for Health and Clinical Excellence) is an independent organisation responsible for providing national guidance on promoting good health and preventing and treating ill health. The NHS follows their advice on determining the most up to date, efficient and cost effective treatment protocols. Once these protocols are set, the various NHS medical centres are bound to follow them, so you will see very similar practices throughout the country. Still, just like in the US, you have individual doctors and consultants who we as patients have to communicate with and there you have the luck of the draw, as always. Care through the NHS is very much like care with a large HMO in the US. The major difference is that in the HMO, you very often have all the specialists at one facility where in the UK, you have a network of local centres and the specialists are all tied to regional hospital based clinics. Also in the HMO, you can make appointments with various specialists without a referral from your primary care physician whereas in the UK you must get a referral from your general practitioner.

In my own experience, I was prescribed Plaquenil as a first line DMARD (disease modifying anti-rheumatic drug) but at the time, scleroderma had not yet been considered as I was experiencing primarily inflammatory polyarthritis. There seems to be a ladder of progression that must be met before they will advance to the next treatment option. I am sure expense comes into it, but Quality of Life is a big factor. I learned this while going through an earlier diagnosis and treatment of cancer. I happened to mention this phrase in a consult, and the doctor's eyes lit up. Now I use it regularly. :) I don't mean to be so long-winded. I will see if I can find an old link which described the treatment protocols.
Warm wishes,
Jefa

Carrie Maddoux
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(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

#10 lizzie

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Posted 11 August 2007 - 11:32 PM

Hi Carrie,

As well as treatment costs, I think one issue that explains some of the diversity
in scleroderma treatment is the lack of much evidence for any particular treatment.

Incidently my sister is married to an American and live in the States (Georgia) and has much more in the way routine screeing tests than she would do here- not sure I would welcome routine colonoscopy though!

When my son was ill in Chicago , one thing that did shock me was that although the Dr wanted to prescribe him Cellcept, we were asked if we could afford it , because if not would have to prescribe something cheaper (and by implication , less effective). However I suppose we have the same issues here to some extent-its just thats its NICE that is the gatekeeper , rather than the insurance company!

Lizzie