Confused re Ap for scleroderma

[Lynne G.SD]

Hi Nancy;
My herx was from the Zith.Within 12 hours of taking it I felt like I had been rolled under a bus.I have not taken any for the last few months but will start up again in a couple of weeks and drop the metronidazole.I’ll tell you if it comes back.

[notabene]

Hi Lynne-

I’ll keep my fingers crossed for you. Will you take a lower dose; ease into it? Do I recall that it’s for the Lyme?

All the best – Nancy

[Debbie star]

@PhilC wrote:

Hi Debbie,

Consider asking your doctor if he will give you a prescription for oxpentifylline (Trental). It is also known as pentoxifylline, but in Australia it is called oxpentifylline. It should help with your circulation and reduce the severity of your Raynaud’s. If your pain is caused by poor blood circulation, and I suspect that it may be to some extent, it may help reduce the pain in your hands and feet (and possibly also your arms and legs). It also has some anti-inflammatory properties, so it may help reduce your pain that way as well. Oxpentifylline is commonly prescribed for scleroderma patients to treat Raynaud’s, so it would not be an unusual request.

Phil

Hi Phil, I went to the dr yesterday and he gave e a script for trental…
Unfortunately i’m not going to be able to take it till after i have an operation on the 26th and i recover from that
so thanks for that
Debbie

[Debbie star]

Hi, can someone please give e the link to the page that has the testimonials on it….
I am after the one that has everyones on one page (where you can click on the links)… cant seem to find it
thanks
Debbie

[Maz]

@Debbie star wrote:

Hi, can someone please give e the link to the page that has the testimonials on it….
I am after the one that has everyones on one page (where you can click on the links)… cant seem to find it
thanks
Debbie

Hi Debbie,

Here are the Road Back Testimonial pages:

https://www.roadback.org/index.cfm/fuseaction/community.sub/subgroup_id/6.html

Rheumatic.org testimonials pages:

http://rheumatic.org/medhist.htm

The Personal Progress Threads on the forum aren’t really testimonials, but where people can document their progress on the therapy as they go:

viewforum.php?f=3

Is it one of these that you meant?

[Debbie star]

Thanks Maz,

yes its the medhist one (second one), great!

Just need a bit of re-assurance

Debbie

[Debbie star]

Hi,

Just wondering if anyone uses trental??
Do you find it helpful for circulation ~ raynards scleroderma, feet and hand/finger pain,

thanks
Debbie

[PhilC]

Hi Debbie,

I just wanted to mention that you should (if possible) make sure that your doctor writes the prescription for the extended-release tablets of oxpentifylline. They are less likely to cause unpleasant side effects compared to the regular kind.

Phil

"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein

[Debbie star]

Hi Phil and thanks…. I have a script here.. It just says trental 400mg,
do you think i should check with him?

I just had surgery (1week) ago and i know he said wait a bit till i start taking them

[Debbie star]

p.s…… i wanted to mention also that after surgery9which was for something else) a lot of my muscular (severe) pain went away in my arms legs and back…
In the hospital they put these things on my legs like shin pads (called skudds i think they said).
They plug them in and one side blows up and then deflates and the other side does the same… I had them on all night.. so maybe they helped circulation… something definitely changed
and im still trying to work out what happened in there

[PhilC]

Hi Debbie,
@Debbie star wrote:

Hi Phil and thanks…. I have a script here.. It just says trental 400mg,
do you think i should check with him?

I think that’s probaby fine. I just checked, and it looks like the regular kind may not be sold anymore, if it ever was.

Phil

"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein

[Debbie star]

🙂 thanks phil

[PhilC]

Hi Debbie,
@Debbie star wrote:

Just wondering if anyone uses trental??
Do you find it helpful for circulation ~ raynards scleroderma, feet and hand/finger pain,

People are definitely taking Trental for Raynaud’s; otherwise, I wouldn’t have suggested it.

See:
Medications to improve circulation
Procardia – Pentoxifylline – plavix

Phil

"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein

[notabene]

My doctor prescribed 30 mg of Procardia, or a generic Nifedipine, daily. I have not had any Raynaud’s attacks since October, when I started taking Procardia, and it has been a brisk winter. My doctor also has Raynaud, so I think he know of what he speaks. An earlier doctor prescribed 5 mg, then 10 mg, of Amlodipin, which did nothing, even though it was summer. It may well be that I needed the higher dose.

[Debbie star]

Just wondering,
I have trouble using my fingers especially on my right hand..(they are trying to curl around ~ i cant straighten them). I have trouble with both wrists as well and cant form a fist with either hand…
i cant get lids off bottles or turn taps etc..cut veges or use scissors
or lift pots etc (due to this and extreme fatigue)
I have trouble with intersection syndrome (right hand) (the two tendons that cross over in your arm on the topside of arm down from the thumb)

What i am wondering is would anyone have similar experience?? and would you go and try and do physio??

I have been on Antibiotic Protocol 8 weeks now and am wondering if these things will change once i start to see results from the antibiotics??

Also i am still having trouble with feet pain (it has lessened a lot, but feels like sharp needly) (sorry hard to explain) sort of pain that changes places (hurt when i walk on them or at night trying to sleep.(no pain when feet are up)
Wondering if it could be circulation (have started taking trental for circulation/raynards) the antibiotics working, or the scleroderma?

I would be grateful for any imput, thanks so much
Debbie

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