MIL update and SD advice

[nspiker]

Hi All,

I wanted to update all of you on my mother-in-law. She was diagnosed with CREST SD a little over a month ago. The rheumatologist immediately put her on antibiotics, doxycycline and bactrim, for an infection in her leg. (Imagine that….an infection….could there be a correlation?) After a month of antibiotics, my MIL is feeling better, some days better than others, and the brown patches on her fingers have completely resolved. Could this be spontaneous reversal, or are the antibiotics having an affect 😮 ?

In speaking with her rheumatologist, she has agreed to prescribe Minocin, which is great! Unfortunately, she called in the prescription for 50 mg. Minocin twice a day. I thought most SD patients could handle 100 mg. BID. What is the preferred dose to begin treatment? She was on 200 mg. of doxycycline for a month with no adverse side-effects. Also, the pharmacy substituted Teva generic minocycline, instead of Minocin, so I’m going to have to get that changed. I was shocked to find that, under their insurance plan, she could order a three months supply of brand-named Minocin for only $25. Wish we were all that lucky!!!

My MIL does not like to take medication, so we are limited on what we can get her to take. That’s where I need your experience and advice. The doctor has her on four medications; Minocin, Plaquenil, Norvasc and hydrochlorothiazide. When she took Plaquenil and Norvasc before, she had to stop because of nausea. Any thoughts on what medication could be causing the nausea? My thought is that Minocin and Plaquenil are critical. I don’t know how effective the others are for Raynauds. What are your thoughts? I can’t get her to consistently take bromelain (systemic enzyme) or probiotics. I really need to streamline what is her best protocol, and one that she will stick with. She doesn’t have high blood pressure, so I’m wondering if she needs to take the calcium channel blocker and the blood thinner, or should I push the systemic enzyme and probiotic instead?

Here’s another bit of good news; my MIL’s rheumatologist has agreed to prescribe IV clindamycin in three months. Maybe we’ll make her a believer 😉 .

I really am looking for your guidance and input…
nancy

[Melinda]

Hi Nancy,

Wow, that IS good news! Your MIL and I have similar dx’s, so I will share what I’ve been doing for the last 10+ months. I started out on 100 mg of Minocin 2x/day on MWF’s. Then in July/August that increased to 100 mg Minocin every other day (incl. weekends). This change helped me a lot! The most recent change was in December, when 300 mg oral clindy 2x/day (every day) was added to my mix (and FM was dx-ed as well as the Ltd Syst SD). So far I’m not seeing any real change with the oral clindy, which is really surprising to me since success with oral clindy for an infection in 2009 was what led me to AP & RB. I just posted a question about that, so maybe someone will have some suggestions for me to get this going faster. I’m so glad that your MIL’s dr has agreed to IV clindy in 3 months. That hasn’t been rx-ed for me yet, but maybe that will come up at my next appt. Do you know what symptom of your MIL’s SD has the dr concerned enough to agree to IV’s soon? I hear that it gives a good boost for many people.

Regarding Raynaud’s, mine is a pain. However, since I also have low blood pressure (usually around 105/70), I’ve been reluctant to take BP meds that would be likely to lower it further. I recently began taking sustained release niacin for the Raynaud’s with good success. I can take it 30 minutes or so before going outside, or eating cold food, shampooing my hair, any of the little things that would bring it on before. With the niacin in advance, now I can usually avoid white hands and feet. Yes, still bundled up to the extent that people look at me like “what the heck is wrong with you?” when I poke my nose outside the door. 😆 But before the niacin no amount of bundling could avoid a Raynaud’s attack when I’d go outside any time the temp was under 70 degrees, which is seldom where I live. So I’m very happy with how it’s working for me. I don’t know if that might be an option for your MIL, but you might ask her dr.

Plaquinil and I aren’t great buddies. I was on it for about 9-10 months and in the beginning it made me feel like I had the stomach flu for the first 2 months. Nausea, diarrhea, cramping…the works. No fun, but my 1st rheumy encouraged me to stick it out and it would get better. I did…after 2 months. Then about 9 months into it, I started to notice a problem with my vision. My opthamologist asked me if the Plaquinil was making a HUGE difference in my SD and the answer was no, not really. So based on his suggestion since he felt that it was what was probably causing my vision problems, I went off of it that day. I know that many people do ok on it. I just wasn’t one of them. I do have some nausea from the mino still, but considering that my GI issues from the SD cause me nausea, it’s not a big deal for me. Especially since in my case, the mino has helped the rest of my SD issues more than anything else before or since has done. Also, I find that Crystal Geyser’s Juice Squeezes (concentrated fruit juice, carbonated water & vit. B12) helps my nausea a lot. That and rice cakes. I don’t leave home without ’em. 😆 Really.

I understand your MIL’s reluctance to take meds, I’m right with there with her on that one. So, I think that your right to try to pick your battles. I’m sure she’ll figure it out for her, but this is what I’ve found works for me:
mino
clindy (not sure about that, yet)
probiotic
niacin
vit. D
vit. E (to help with the cysts that I seem to grow like mad that otherwise keep me stuck in a mammography cruncher..agh!)
multi-vit w/iron
iron (when I remember to take it…. 😳
That’s roughly in order of what I’ve chosen to be my priorities (although I know that iron should be a higher priority for me, it’s just hard to fit in around the abx’s and busy mom schedule). I’m sure that between your experience, your MIL & her dr that you’ll find the right combo for her. Please wish her well for me, would you? She’s so blessed to have all of your help & support. Most of us have to muddle through for sometime before we find AP. I’m just so grateful that I’m on it now though.

[Randy]

Melinda,

What is your dosing for the Niacin?

Randy

Diffuse SD since Apr '07
AP since Feb '08
100mg Mino twice daily
Stopped Clindamycin IVs Aug 2019
"No one should profit over someone else's illness"

[Melinda]

Hi Randy,
They are 500 mg tabs and I was told to only take 1 a day, but up to a max of 2 a day if necessary. So far, I’ve been taking 1 a day only when I have a problem or when I’m expecting one (the cold food, going outside kind of thing). I can actually see the difference, because my fingers pink up more than usual and I feel warmer and more comfortable (like before the Raynaud’s began a few years ago). However, this is just me. You might check with your dr to see if it’s ok for you, too. BTW, I’ve watched your progress with a big smile. 😀 I hope that you are still feeling well. Take care!
Melinda

[Maz]

Hi Melinda,

How interesting that niacin is helping so much with your Raynaud’s! That’s great….and I can’t help but ask…do you think this effect might be caused by a common side-effect of niacin which can induce “flushing?” If so, I don’t think it’s dangerous or anything, but just interesting that these hot flashes (caused by vasodilation) might actually be a beneficial side-effect of this supplement. Have you asked your doc about this possibility?

http://www.nutritional-supplements-health-guide.com/niacin-side-effects.html

Oh…also, have recently just learned about a supplement called L-Arginine, which is something athletes take to improve performance. One of its effects is to dilate blood vessels to increase oxygenation and blood flow, but also to improve blood pressure (may not be so good if one already has low BP, though). Just thought this was interesting in light of the fact that some SDers use Viagra to improve circulation (it was actually designed for this purpose originally but is now touted as an erectile dysfunction drug). L-arginine actually has the same effects, but…as usual… all supps like this one should be discussed with one’s doc. 😉

http://altmedicine.about.com/cs/herbsvitaminsad/a/Arginine.htm

Thanks for sharing! 🙂

[nspiker]

Melinda wrote:

Do you know what symptom of your MIL’s SD has the dr concerned enough to agree to IV’s soon? I hear that it gives a good boost for many people.

My MIL’s doctor is not an AP doctor. I gave the rheumatologist documentation and specifically asked if she would prescribe Minocin and IV Clindamycin. She wasn’t responding to any specific symptom, and in fact she is not convinced that AP will resolve any symptoms. That’s OK, because we KNOW it will!

Thank you for information on Niacin. That’s a great alternative to the blood pressure medications. It seems crazy to me to give these meds to someone with normal blood pressure. I don’t want to tell her not to take them, because it has to be her decision, but this will give her another option.

I have found clindy to be a great drug. That’s too bad it hasn’t done much for you so far. What dose are you taking? I’m surprised you have tolerated it so well, given your nausea with minocin. I can not take it orally, because it wreaks havoc with my stomach.

Maybe it was the plaquenil that made my MIL nauseous. Has anyone with SD/Raynauds benefited from this drug? What about the blood pressure medication…has anyone improved, or not, with these drugs? I really would like to get some more feedback on these medications.

Thanks Melinda for all the information…
nancy

[Maz]

@nspiker wrote:

Maybe it was the plaquenil that made my MIL nauseous.

Hi Nancy,

Sorry to rush, but must hit the sack…I’m currently on plaquenil and it can cause stomach upset (and gas), especially if taken on an empty stomach…it needs to be taken with food.

Night! 🙂

[Melinda]

@Maz wrote:

Hi Melinda,

How interesting that niacin is helping so much with your Raynaud’s! That’s great….and I can’t help but ask…do you think this effect might be caused by a common side-effect of niacin which can induce “flushing?” If so, I don’t think it’s dangerous or anything, but just interesting that these hot flashes (caused by vasodilation) might actually be a beneficial side-effect of this supplement. Have you asked your doc about this possibility?

http://www.nutritional-supplements-health-guide.com/niacin-side-effects.html

Oh…also, have recently just learned about a supplement called L-Arginine, which is something athletes take to improve performance. One of its effects is to dilate blood vessels to increase oxygenation and blood flow, but also to improve blood pressure (may not be so good if one already has low BP, though). Just thought this was interesting in light of the fact that some SDers use Viagra to improve circulation (it was actually designed for this purpose originally but is now touted as an erectile dysfunction drug). L-arginine actually has the same effects, but…as usual… all supps like this one should be discussed with one’s doc. 😉

http://altmedicine.about.com/cs/herbsvitaminsad/a/Arginine.htm

Thanks for sharing! 🙂

Hi Maz! Yes, I’m sure it was the flushing side effect that the dr was looking for when it was suggested to me. I recall that being mentioned and I’m familiar with that side effect from taking plain (not sustained release) niacin years ago. Back then it was like a massive hot flash that wore off quickly. With this sustained release niacin though, I don’t turn bright red and feel like I’m burning up. For me it’s just a slow, steady warm feeling that lasts hours. Again though, that’s just me & I’d definitely recommend that someone check with their dr before starting anything new. I’m very cautious about everything, including supplements, so I don’t think that I’d have ever tried this if it hadn’t been suggested by my dr. and everyone is different. Always best to check first! Thanks for the info on the L-arginine! I’ll mention that also at my next check up. That’s good to know!

[Melinda]

@nspiker wrote:

Melinda wrote:

Do you know what symptom of your MIL’s SD has the dr concerned enough to agree to IV’s soon? I hear that it gives a good boost for many people.

My MIL’s doctor is not an AP doctor. I gave the rheumatologist documentation and specifically asked if she would prescribe Minocin and IV Clindamycin. She wasn’t responding to any specific symptom, and in fact she is not convinced that AP will resolve any symptoms. That’s OK, because we KNOW it will!

Thank you for information on Niacin. That’s a great alternative to the blood pressure medications. It seems crazy to me to give these meds to someone with normal blood pressure. I don’t want to tell her not to take them, because it has to be her decision, but this will give her another option.

I have found clindy to be a great drug. That’s too bad it hasn’t done much for you so far. What dose are you taking? I’m surprised you have tolerated it so well, given your nausea with minocin. I can not take it orally, because it wreaks havoc with my stomach.

Maybe it was the plaquenil that made my MIL nauseous. Has anyone with SD/Raynauds benefited from this drug? What about the blood pressure medication…has anyone improved, or not, with these drugs? I really would like to get some more feedback on these medications.

Thanks Melinda for all the information…
nancy

Hi Nancy, you’re very welcome. It’s good that even though she’s not familiar with AP, that this dr is still willing to try it. Maybe we’ll soon have a new (dr) believer? Right? 🙂

I believe that some BP meds are given to SD patients occasionally to try to avoid Scleroderma Renal Crisis, but I’m not positive about that. So it may be a good idea to discuss at length the benefits vs. risks w/her dr. My mom has Sjogren’s and her dr put her on a massive dose (IMO) of pred last year (like 60 mg/day) for months. I was having a fit b/c of the risk of SRC and her dx wasn’t certain at the time, but no one was paying any attention to “the kid” (sigh, at 50 you’re still a kid to your mom). Then she started to retain a lot of fluid, BP climbing & the other scary things pred can do and she remembered the warnings and got to the dr. Fortunately, she was already on a BP med and that may have helped her. She’s off of the pred now & thankfully her kidneys seem ok. But no, she’s still not listening to me. 😆 🙄 Despite her having had numerous tick bites just prior to getting sick, I can’t get her to go to an LLMD. Sigh. I’m glad that your MIL is receptive.

Clindy? I’m on 300 mg morning and evening every day. Yes, in the beginning it made my stomach sound like a cement mixer (not pretty!) and gave me some other unpleasant lower GI issues, but nothing too severe or c-diff like. I backed off the clindy then and upped the probiotic until things settled down. Then restarted the clindy lower & slower for a week or two until I could tolerate the whole dosage. I’ve been on the full dose for ~6 weeks & it’s going ok now GI-wise. I’m just waiting to see some more herxing, followed by more improvement. I guess I just need more patience. Did you notice a difference in your symptoms on clindy vs. on zith? It looks like you are taking zith now?

Nancy, you might want to PM Michele about the BP meds to see if she has some insight for you since her mom is on dialysis due to SRC. Just a thought.

Take care!
Melinda

[nspiker]

Melinda wrote:

I believe that some BP meds are given to SD patients occasionally to try to avoid Scleroderma Renal Crisis, but I’m not positive about that. So it may be a good idea to discuss at length the benefits vs. risks w/her dr.

My MIL does not have renal issues, thank goodness! She was prescribed the BP meds for Raynauds. Anyone else have an opinion on the BP meds and their usefulness against Raynauds? Are they worth taking ? I really would like more input…..please.

nancy

[lajc]

Hi Nancy,

I’m actually hoping that you can help me. I believe that you had indicated that your mil was in a hospital in the Houston medical
center. I also live in the Houston area, was diagnosed with SD in November 2010 by my dermatologist, and need a work-up with a rheumy. Since you’ve convinced your mil’s rheumy to start the AP maybe it’ll be easier for her to consider me also. Anyway,
if you can provide her name and maybe a phone number I would greatly appreciate it.

This is my first post so hopefully I’m doing it right. Don’t know how to pm but I can give you my email.

Thanks……..Laurie

[Parisa]

Laurie,

Did your dermatologist give you Minocin? If not, ask him to try it on you as I’m sure he has prescribed it to many teenagers for their acne. My teenage son is currently taking Minocin for his acne. The Minocin brand is preferred over generic for scleroderma although some people have done well I believe the the Stiefel generic version.

[nspiker]

Hi Laurie,

Welcome to the Roadback. It’s great that you have found this site so quickly after diagnosis and sorry you had to seek us out at all. I will send you a Private Message with my MIL’s doctor’s info. I also have the name of two other doctors in the area, who prescribe AP. Click on the button that says PM, and you should be able to retrieve my message.

Nancy

[lajc]

Nancy,

Thankyou so much for the info. and for allowing me to use you and your MIL as my referral. I was diagnosed via skin biopsy and don’t have any lab work, thus the need to see the rheumy. There’s no denying that I have SD, it’s in my hands, arms, abdomen, neck and face. I just want to have the lab work so that I know where I’m at. I feel so blessed to have found this site so quickly. Needless to say, I’ve spent hours on the internet. Again, thankyou Nancy …..I appreciate you and all the other great people here on the roadback.

Parisa,

The dermatologist offered me nothing and at the time I didn’t know to ask for anything……I was in shock. She simply said that I needed a workup by a rheumy. I will definitely be asking for Minocin !!!!

Thanks……Laurie

[Parisa]

Hi Nancy,

I”ve been thinking about your dilemma. It’s really hard when you are dealing with someone who is set in their ways. If you force something on them and then something goes wrong, then you feel like you are to blame so it puts a huge burden on you. Of course, if you don’t help them it is also a burden. My husband took plaquenil for quite a while. The LLMD said it would help to potentiate some of the other antibiotics and there was also the anti-inflammatory effect. I’m not sure that it did that much for him. He also had stomach problems but I don’t know if we could tell what was pills and what was the disease.

Do you think if you used a pill organizer it would help your MIL? Is Raynaud’s much of an issue for her? Warmer weather is around the corner and who knows by next winter maybe she’ll be in much better shape. Does she have gloves to keep her fingers warm. Not letting the hands get cold in the fist place is really important. I bought my husband a 7 day supply of silk liner gloves so he would have enough to have a fresh pair everyday.

[Author]

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