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My husband has scleroderma with lung involvement. He started on the minocycline last June but was not able to tolerate it well although it did seem to help with his breathing while he was on it. Then he went to Doxycycline but ended up with the same exhaustion as with the mino. Had some blood work done which showed low iron so he started on the iron supplements and finally started feeling some energy returning when he switched to the liquid iron. He has also started back on 50 mg mino MWF and is tolerating it well but now his lungs are acting up again so he is back on 40 mg tapering dose of prednisone and abx for a couple of weeks along with a pulmocort inhaler ( inhaled steroid). He is thinking he will have to stay on pred plus the inhaler forever. Do any of you with lung involvement have to stay on like 2.5 mg of pred and use the pulmocort or do you just have success with the mino? Dr wants him on a maintenance dose of pred no higher than 5 mg. Then I hear the horror stories about pred causing renal failure and it scares me to death! Thanks for any advice you can offer!
Sherry
Hi Sherry,
My husband has scleroderma with lung involvement. He started on the minocycline last June but was not able to tolerate it well although it did seem to help with his breathing while he was on it. Then he went to Doxycycline but ended up with the same exhaustion as with the mino.
When you say, “…was not able to tolerate it well,” what do you mean? Was it mostly exhaustion and reflux or something else? Does your hubby have any measureable inflammation? If so, there is a strong potential for herxing, which can include such symptoms.
Had some blood work done which showed low iron so he started on the iron supplements and finally started feeling some energy returning when he switched to the liquid iron.
Low iron can definitely result in iron-deficiency anemia, which could explain the exhaustion.
He has also started back on 50 mg mino MWF and is tolerating it well but now his lungs are acting up again so he is back on 40 mg tapering dose of prednisone and abx for a couple of weeks along with a pulmocort inhaler ( inhaled steroid). He is thinking he will have to stay on pred plus the inhaler forever. Do any of you with lung involvement have to stay on like 2.5 mg of pred and use the pulmocort or do you just have success with the mino? Dr wants him on a maintenance dose of pred no higher than 5 mg. Then I hear the horror stories about pred causing renal failure and it scares me to death! Thanks for any advice you can offer!
When lungs start acting up with SD, it’s worthwhile considering acid reflux. Also, has he been tested for helicobacter pylori? This spirochetal infection has been correlated with SD in European studies and tetracyclines can stir it up. When reflux occurs, it can be aspirated into the lungs and create issues such as you’re describing. I’m just trying to connect some dots here, because while pred will reduce inflammation, aspirated stomach acid can lead to lung fibrosis and chronic lung infections, so finding an alternative to this would definitely be helpful. So, if he’s not on anything to control his stomach acid and prevent reflux, then this might be a first step. Raising the head of the bed with dorm stilts or a specially-designed triangular pillow from Bed Bath and Beyond that goes under the mattress can be helpful. Also, ensuring the mino or doxy is not taken for at least a couple hours before lying down with a full glass of water.
Glutathione is the body’s master detoxifier and healthy lungs are full of it. In fact, NAC, an over the counter supplement, is a precursor to glutathione and is used in ERs to detoxify the liver after aspirin overdose, but also in IV form for kids with cystic fibrosis, due to its mucolytic properties. So, researching NAC, glutathione IV pushes, curcumin (which promotes glutathione), non-denatured whey protein, etc., are all good ways to help an ailing body to detoxify and help heal the lungs.
Getting tested for H. Pylori is also a worthwhile step, because this infection will produce reflux, gastritis, stomach ulcers, and a plethora of other gut issues, and so targeted antibiotic therapy along with bismuth might be more effective than adding a PPI and could also produce a swifter response in terms of the SD. One supplement that has been studied for H. Pylori is bovine colostrum and this supplement is used to heal the gut, because it is packed with immunoglobulins, growth factors and has antibacterial, antiviral and anti-fungal properties. H. Pylori is highly susceptible to bovine colostrum.
Sherry, if you would kindly add a signature line (instructions in Announcement thread at top of the forum), adding all your husband’s meds, supps, as well as his date of diagnosis and AP history, it should help in generating responses to your questions. It’s unfortunate that he can only tolerate such a low, pulsed dose of mino or doxy, because SD patients tend to do much better on the daily protocol (100mg twice daily). If reflux is causing his lung issues, then getting to the bottom of this may well help him to tolerate higher doses, too. And, I hate to say it, because I know Minocin costs way too much now, but the pelleted version is a modified release, which dissolves lower in the gut and may produce less in the way of relux than powdered capsules that tend to dissolve in a more rapid release in the stomach. If he’s not using Minocin, then it might help to know that some folks here have been able to play the reflux card , negotiating with their insurance carriers to get it covered due to its modified release form.
These are just a few considerations, but am flying a bit blind here and just thoughts for you to further research to see if they might be of help in some way. I hope so.
Sherry
Thank you for your thorough response Maz! For starters, we do not have health insurance of any type, we pay as we go and are using a primary care doctor. No specialist will see him without insurance. That said, there are many, many tests that we do not have the money to have done. He was given a couple of blood tests, one which showed postitive for autoimmune disease but not specifically sclero. His doctor has diagnosed sclero anyway due to the raynauds, spots on the face, GERD, slow motility and breathing difficutly. X-rays show something the doctor called “ground glass” which I took to mean fibrosis although I may be wrong on that. When he first started the mino after a few days he could not stay awake. he would sleep for hours and hours. I don’t know if it was not tolerating it or if it was due to the low iron which we were unaware of at the time. He is now up to 50 mg daily and will increase to 100 mg daily next week. He is taking Prilosec for the GERD and the head of the bed has been raised a LOT:) I think we have a bottle of NAC that I purchased somewhere along the line so I will discuss with him about supplementing with that as well. Thank you!
Sherry
Sherry, did the ground glass on lung X-ray show up prior to or after starting mino? There is a rare side effect of mino called minocycline-induced pneumonitis that can appear this way and it’s one of the defining ‘markers” for this drug side effect. Hopefully, this is not the case for your hubby and it’s an incidental finding, but if this has occurred after starting mino, then it’s worth asking the doctor about, just to rule it in or out. It us pretty rare and we’ve only had one or two cases here in the last decade that I can recall:
http://pubs.rsna.org/doi/full/10.1148/radiol.2243011236
I know it can be difficult with limited resources but do what you can manage to ensure hubby’s lungs are well supported and, if finances allow, to research and consider some of the helpful adjuncts. There are also other classes of antibiotics that can be trialed, if necessary.
Ok his x-ray taken last Friday looked about the same as the one taken about a year or so ago except for some inflammation or something in the upper area so I am not thinking the mino caused it. In fact i was quite glad that his lungs had not gotten worse in that length of time. He didn’t get the mino prescription until mid June of 2015.
We have both read about using the herb mullein for lung health so I make him mullein tea every evening. I know when he had problems before the mullein tea helped a lot.
That is great to hear, Sherry, and really good to hear you have the pre/post mino x-rays for comparison! So, for now, it’s just ensuring he can remain on his mino in a tolerable dose with the goal of increasing it with time, if that is what he and his doc want to do. Progress may simply be slow because he’s on such a low dose in other words, though generic variance can also play a role, as some seem to work better than others.
I’m unable to share anything on the herbal tea you mentioned, but hope it works well for him. Hopefully, he’s also being careful about diet and ensuring adequate, good quality probiotic intake and taking care of his gut health (bovine colostrum, for example, has some very helpful properties in this regard).
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