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LouiseH

Advice needed about treatment for ulcers

21 posts in this topic

Hi, 

 

Hopefully someone can help me?

 

I have been suffering with bad ulcers on my fingers and have very poor circulation, the ulcers are very painful and often have infections under them which is very painful.

 

I'm currently not on any tablets for this but I have been told I can go into hospital to have an IV drip called Iloprost.   However, due to my needle phobia I have put this down to a last resort.

 

Can anyone let me know what treatments/tablets they are on for ulcers and if they have had much success with them, I really would like to find hope in a tablet first if possible, but if not I will have to have the Iloprost done.

 

Any help would be great, thank you so much.

 

Louise

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Hi Louise,

 

Poor you, its not easy having to put up with painful fingertips. I also have had very painful ulcers on my fingers due to severe Raynauds. I have had a multitude of treatments for this. Initially I was prescribed nifedipine and took quite a large dose of this - 20mg three times a day. I also commenced iloprost infusions every 3 months and was also prescribed fluoxetine by my rheumatologist.

 

Around 18 months ago I stopped taking the nifedipine. as I was experiencing some unpleasant side effects, but continued with the iloprost and the fluoxetine. It took at least a year for there to be any significant improvement but I am so glad that I persevered with the iloprost because now my fingers are the best they have been for years. I still get attacks of the Raynauds every day but my fingers do not break down like they used to.

 

Two of my fingers have permanent sores on them but they are nowhere near as painful as they used to be. Some people are unable to tolerate the iloprost infusions, as I am sure they will tell you, but I have only suffered the odd mild headache. My care team are, however, fantastic and will adjust the speed of the infusion to suit me. I have it over a 24 hour period, causing minimum disruption to family life.

 

It's pretty much trial and error, I think, trying to find a treatment that works for you and that doesn't cause you side effects that are intolerable.  Good luck with whatever treatment you decide to try as I know how fed up and desperate I felt at times when my ulcers were really bad.

 

WARM wishes,

 

Helen

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Hi Helen,

 

Thanks for the reply.

 

I have been on Nifedipine in the past but had bad headaches when I was on it therefore I came off after a short while. 

I think my best bet is to try the Iloprost, is 3 months the time that it lasts and are you allowed to keep having it done as often as you need it?

 

Many thanks for the info

 

Louise.

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Hi Louise,

 

When I was still getting Raynaud's attacks all the time my general practitioner tried me on Nifedipine and that didn't work but also gave me a constant headache.   Changed to Amlodipine and not only did the attacks lessen but my Migraines disappeared completely for a good 7 years!!

 

Next thing I noticed after about 7 years was that the Raynaud's was gone - just gone :emoticons-clap: .

 

I have to say now that I am not headache free any more but not having Raynaud's attacks is bliss.  Just in case you start getting excited, I have to say that I think the difference now is the number of years I have had Sclero.   We hear stories of symptoms improving sometimes and since I am nearly 70 and have had Sclero for almost 50 years I think it might be on the wane.

 

In the meantime, keep trying different meds until you get some relief.

Best wishes

Judyt

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Hi Louise,

 

I'm so sorry to hear that you've been suffering with painful digital ulcers; they sound excruciating and thankfully I've never experienced them. I'm hoping that pleasure will be postponed indefinitely! ;)

 

We have medical pages on Treatment of Digital Ulcers, Research on Digital Ulcers and also a thread on Digital Ulcers all of which I hope you'll find helpful and informative.

 

A number of our members have had Iloprost infusions, with, I think, quite satisfactory results and I've included a link to Iloprost for the treatment of systemic sclerosis and also a link to another thread about Iloprost Infusions with lots of helpful advice.

 

I do hope that whatever treatment you decide to have will be successful and that you do get some relief from the painful ulcers.

 

Kind regards,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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Hi Louise

I think that it is just not recommended more often than every 3 months because of potential side effects but not really sure. I get mine on the 3 monthly basis because that is how often I see my specialist - very convenient. I feel that because my fingers are so improved that I don't want to know how they would be if I didn't have the iloprost as regularly, if you see what I mean, and my consultant agrees with this, thankfully.

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Hello!

 

I get ulcers on my fingers as well.  I've been fortunate to have them be relatively small (I have had them very large before), but maybe that's because of what I do when I get them.

 

I often use polysporin on them and put bandaids on them, but I don't know if that really helps in the long run other than to reduce some pain for awhile, because they don't seem to dry out well once they're healing.

 

But what seems to work for me are nitroglycerin patches.  If I have an active ulcer, I just keep using them each day as prescribed and I think they might be helping to keep the ulcers smaller.

 

So that might be something to try.

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Hi Louise,

 

When I was still getting Raynaud's attacks all the time my general practitioner tried me on Nifedipine and that didn't work but also gave me a constant headache.  

Changed to Amlodipine and not only did the attacks lessen but my Migraines disappeared completely for a good 7 years!!

 

 

I used to be on amplodipine but gave it up when I was pregnant and haven't gone back on it yet but think I will be again soon when I see my consultant next.

Just wondering what dose of amplodipine were you on per day?

 

Thanks for your help.

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Hi Louise,

 

I'm so sorry to hear that you've been suffering with painful digital ulcers; they sound excruciating and thankfully I've never experienced them. I'm hoping that pleasure will be postponed indefinitely! ;)

 

We have medical pages on Treatment of Digital Ulcers, Research on Digital Ulcers and also a thread on Digital Ulcers all of which I hope you'll find helpful and informative.

 

A number of our members have had Iloprost infusions, with, I think, quite satisfactory results and I've included a link to Iloprost for the treatment of systemic sclerosis and also a link to another thread about Iloprost Infusions with lots of helpful advice.

 

I do hope that whatever treatment you decide to have will be successful and that you do get some relief from the painful ulcers.

 

Kind regards,

 

 

I will have a good read of these pages, many thanks.

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Hello!

 

I get ulcers on my fingers as well.  I've been fortunate to have them be relatively small (I have had them very large before), but maybe that's because of what I do when I get them.

 

I often use polysporin on them and put bandaids on them, but I don't know if that really helps in the long run other than to reduce some pain for awhile, because they don't seem to dry out well once they're healing.

 

But what seems to work for me are nitroglycerin patches.  If I have an active ulcer, I just keep using them each day as prescribed and I think they might be helping to keep the ulcers smaller.

 

So that might be something to try.

 

 

I have not heard of either of these things so I will be looking into finding out more about them and willing to give anything a go, thank you.

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Hi, just thought I would give the kind people who replied to my post an update of my treatment:

 

I decided to have the iloprost in October; I had it for 6 hours over 5 days.  I did have some side affects whilst I was having the treatment but as soon as I came off the IV and went home at the end of each day the side affects had gone within half an hour. As for the results I would say I noticed a good improvement for about 2 months but then they returned to being bad again. :(  I'm really hoping there is something I can have in a tablet form as I don't really want to have the iloprost every 2 months.

 

Anyway, thought I'd give you an update.

 

Louise :)

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Hi Louise,

 

Thanks so much for the update.

 

I'm pleased to hear that you had a good result from the iloprost, albeit that it only lasted for a couple of months. Unfortunately, from what I understand from our other members who've had the treatment, the improvement does seem to only last for two to three months before the symptoms return. I've heard of iloprost being available in tablet form, although whether that's as effective as the infusion, I can't advise you.

 

I do hope that you will be able to find a satisfactory medication to help improve your symptoms for a longer period.

 

Kind regards,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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Hello Louise

 

If I may be blunt, ulcers as a result of Secondary Raynaud's (as in secondary to systemic scleroderma) are a chronic problem and require aggressive treatment and trump your dislike of needles and Iloprost.

 

Now let me just explain my position, I had Iloprost once in 2007, 6 hours a day over 5 days and I NEVER had it again. The side effects were truly awful for me and as my Raynaud's is not bad why suffer needlessly! 
 

I have had the same ulcers for 4 years! I have foot ulcers cause by the breakdown of skin not because of poor blood flow, and have just been discharged from the hospital as there's nothing more they can do for me! Great eh? Skin grafts were bandied about but even I knew they'd never work, after all I still have tight skin all over my feet and ankles so the grafted skin would never take and of course I'd then have fresh wounds elsewhere that may not have healed.

 

As far as the ulcers are concerned, district nursing will continue and I'll just have to live with great patches of open skin on my feet I guess. Painful? Oh yes!

 

If Iloprost improves your Raynaud's and therefore the ulcers, maybe you should continue with it? I know of people who have it as regularly as every 3 months. If it would help my ulcers I would have it again believe me!

 

I am also on Amlodipine, 10 mg once a day, for blood pressure and my migraines also disappeared! Scleroderma and Raynaud's are vascular diseases and migraines are a type of vascular headache, during the first two years of my scleroderma the migraines returned with a vengeance, having previously disappeared for about 5 years. It was not until I added Amlodipine into my drug regime that the migraines again went! Let me tell you that given the choice then I would have had rid of the migraines over the scleroderma because they were that painful, that frequent, that debilitating and unpredictable, of course I was yet to have any internal organ involvement from the scleroderma.

 

Take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Louise, it's me again, have a look at the series of Raynaud's videos, there's 4 in all with advice about preventing, treating and managing Raynaud's. It's worth remembering that Raynaud's in scleroderma can become so severe as to require amputation so keeping aggressively warm as well as promptly treating all Raynaud's attacks is essential for all people with scleroderma.

 

Take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Thanks for the advice, sorry to hear about the problems you have been having :(
 

I have spoken to my consultant and I am going to have the iloprost done again on the 3rd of March; he is also looking into a tablet I might be able to have to help improve my circulation.

 

I will keep you updated and thanks again for the advice from you all :)

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Hello Louise
 
What tablet is your doctor considering?  I am assuming it's not oral Iloprost as this has been proven ineffective for people with Raynaud's secondary to scleroderma. Have a look at our Raynaud's Treatments page.

 

Take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Just an update,
I had the Iloprost last week and unfortunately I didn't react as well this time.

I had constant headaches, felt sick & every time I stood up and try to move around I felt like I was going to faint and went all dizzy. The worst thing for me is none of this stopped after the treatment finished 3 days ago and the side affects are still continuing :(

Did anyone else have this and how long did it take for the side affects to wear off?

Thanks for help,
Louise.

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Hi Louise,

 

Oh dear, what a shame you had such a bad reaction to the iloprost this time. :(

 

I've never had the treatment, so can't advise you, but there is a lady who comes to one of my local group meetings, who had exactly the same problem and unfortunately she had to discontinue with iloprost, as she found the side effects such as you describe, so unbearable that she didn't feel that she was getting any benefit from the treatment at all. 

 

Perhaps your consultant could suggest another treatment that could be helpful to you?

 

Kind regards,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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Hello Louise

 

I am sorry! I have heard of the odd one or two having continuing symptoms but don't know for how long. I would guess your symptoms have now abaited and if not I wonder if the Iloprost triggered off something else? How are you now?


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Hi Louise,

 

I'm sorry you had such side effects from the iloprost. How long did the bad effects linger?  Do you have another treatment plan now?  If not, you may want to peruse our pages on Raynaud's Prevention and Raynaud's Treatment.

 

In any event, I hope you are feeling better now that the pain of side effects has (hopefully) subsided.

 

:emoticons-group-hug:


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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