2nd Round of Clindy IV

[mlouise]

Well Everyone,
I had my second round of Clindy IV two weeks ago. I do not seem to notice as much dramatic change as the first round in December, my skin is DEFINITELY looser though and I can squeeze about an 1/8 of an inch of skin on the back of my hands. (Well, I can’t pinch it because my fingers can’t get that close together, but the Dr did.)
My esophagus is no better. It is very difficult to get the food to go ALLL the way down, than it is equally difficult to keep the acid down. I have to be soooo careful what I eat, when I eat, and what I do after I eat. Do others have this same problem, especially after about 11 months of AP? Also do any of you take Nexium for heartburn and acid reflux? I still have some pills left from a prescription that came from my original Dr at Johns Hopkins. I use them occasionally. Would it be OK to take them regularly or should they only be used as needed. By the time I need them , I am in absolute misery. What do others do for heartburn and acid reflux? Has anyone ever gotten rid of it and how long did it take?
By the way, my intense itching has subsided(YAH) and just like Maria said about 6 months from the onset. Mlouise

[Maz]

@mlouise wrote:

My esophagus is no better. It is very difficult to get the food to go ALLL the way down, than it is equally difficult to keep the acid down. I have to be soooo careful what I eat, when I eat, and what I do after I eat. Do others have this same problem, especially after about 11 months of AP? Also do any of you take Nexium for heartburn and acid reflux? I still have some pills left from a prescription that came from my original Dr at Johns Hopkins. I use them occasionally. Would it be OK to take them regularly or should they only be used as needed. By the time I need them , I am in absolute misery. What do others do for heartburn and acid reflux? Has anyone ever gotten rid of it and how long did it take?

MLouise, this is all excellent news!!! You’re doing great and forward progress is what it’s all about. 😀

Internal involvement can take some time (several years or longer in some instances) to recover and some SD patients with esophageal and reflux issues will use PPIs, but as far as I know these need to be taken fairly regularly as their effect is cumulative.

One way to help prevent reflux at night is to buy a foam wedge for your bed and insert it under your mattress or raise the top end of the bed on stilts that you can buy from Bed, Bath and Beyond…college kids like to buy these to raise their dorm beds for under-bed storage.

Some people find that taking apple cider vinegar helps to relieve acid reflux, but I think very often in the case of SD, it can be a stomach sphincter mechanical problem (due to scarring) that causes the reflux issues and lack of esophageal motility and narrowing that causes the difficulties in swallowing.

Have you been able to check into dietary concerns? A few SDers here seem to have celiac/gluten sensitivity, which can create a lot of gut issues (inflammation), allergy-like symptoms and malabsorption. Gut issues, in general, seem to be a big problem for SDers and it makes sense to look at all the possible angles.

These are just a few things that popped to mind, but hoping the SD folk will chime in with their personal experienced insight for you.

[Melinda]

Hi MLouise,
I’m so happy that you are noticing skin improvement. Congrats!!! It’s so exciting to be seeing positive changes, isn’t it?

Boy, I feel for you regarding the reflux. My SD really went after my digestive system and it was so miserable! It was, as Maz mentioned, a mechanical issue due to the SD as my stomach valve was barely functioning. I was on 40-80 mg Prilosec for GERD every day for a few years, otherwise it was non-stop! The reflux also really exacerbated my asthma, so controlling it was important for my lungs, too. The good news is that after being on AP for 8 months, I began to notice that the reflux was beginning to improve and I’ve been able to gradually decrease the Prilosec and stay comfortable. I do alwayssleep inclined (no lower than a 45 degree angle). I’m very careful about that! I also am careful to stay completely upright after I take my mino and I stay that way at least until I have waited long enough to eat some food to avoid the mino coming back up and burn my newly healing esophagus. Oh & I have been on a totally gluten-free diet for about 14 months now, too. Anyway, between the Prilosec (huge!), sleeping inclined & careful diet helping to control the on-going damage and thankfully, the mino knocking down the SD (even HUGE-er 😀 ), I’ve been able to keep the esophageal healing going.

The AP dr was so happy to hear of this improvement at my 8 mo. on AP recheck. Saying that it’s just another sign that my internal involvement is improving. I really hope that with more time on the mino and the boost from the clindy IV’s that you will also notice improvement in your GERD, too.

BTW, I tried Zantec, but only Prilosec worked for me and only when I took it both in the AM & PM. My reflux would break back through about 12 hrs after the med. But that’s just me. I’d definitely suggest that you see what your dr suggests for you. In any case though, I sure hope that you get some relief from the heartburn soon.

Finally, can you tell me more about the rash that you mentioned? Is it only since you’ve been on the Clindy? I ask b/c I was on daily oral clindy (in addition to the mino) from December until about a week ago. However, I’ve had a mild rash on my lower legs (mostly shins & ankles) pretty much that whole time. It hardly showed, but itched like crazy! Being the stubborn person that I am 😉 and not wanting to drop one of my abx, I tried to ignore it and didn’t mention it to the dr until a week or so ago. Of course, they pulled me off of the clindy for 2 weeks. Sigh. It took about a week, but the rash/itch did improve. Unfortunately though, the pain & stiffness (and contractures in my hands) began to worsen dramatically within a few days after discontinuing the clindy, so I am concerned. What did you hear was causing your itching? I know that SD often causes itching before skin tightening. So, was that the cause of your itching, or is your’s a result of detox or an abx reaction? I’ll see my dr again very soon and I’m wondering if mine could’ve been the abx specifically or maybe just a need for more detox. 😕

[mlouise]

Hi! Melinda,
I thank you for the thoughts about acid reflux. I think I will take the rest of the Nexium regularly to keep the acid reflux at bay. Do you get prilosec over the counter? I will try it. Anything – some days even the vitamins cause acid.
Ii never actually had a rash per se, I had intense itching especially on my back and stomach. I actually scratched my skin open on my shoulder blades and if I could have gotten to my back I would have had it in ribbons as well. I heard from others on here (Kim, apbeliever, and mschmidt(Maria)) that they also had similar experiences. I coated myself in lotions and especially coconut oil and tea tree oil. When it became unbearable I took 100mg benedryl morning and evenings, but that tended to make me a little incoherent. Everyone seems to think that the itching is related to the skin softening and the break up of the callogen under the skin layer. It began at about 3 months on AP and lasted about 6 months. I did not even realize that it had subsided until my husband said, “You haven’t asked me to scratch your back lately.” Then I realized that it really did not itch anymore. I still get occasional itching on bones like my wrists or collar bones, and especially my ribs, these are still areas where the skin to still tight. So I think that they are loosening up as well.
Maz, thanks for the response: I have been sleeping with my head, neck and upper back elevated. I am always upright for at least 2 hours after taking any pills. I know that when I was taking the Nexium regularly I felt better, but I just don’t know if it is good to take it all the time. mlouise

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