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Diana,
I, too am extremely sorry for the loss of your husband. You and your family will be in my thoughts and prayers. God bless and watch over you always.
Take care….Alli
Hi Sydnie,
I read your email and want to share with you my last experience. A few weeks back I found myself being extremely tired and out of breath at the slightest exertion of any kind. Walking a few steps and even talking felt like it was a pretty big strain. And on top of that my joints were achey. At first it was my knees and I told myself it was because I had gained about 5 pounds over the summer (I know, WHO gains weight in the summer, right??). As time went on, it was my elbows, shoulders, wrists and hips. Plus, I was having an even harder time sleeping, there were many nights when I was only able to get 3, maybe 4 hours of rest. I was exhausted by the time I finally decided to go to my GP.
They checked my blood pressure and it was pretty high for me (168/94) – mine consistently runs 90/60. I have never had high blood pressure before. I was a little bit nervous as to what was going on. My oxygen sat was 91, which is a little low for me. Dr. came in and I told her of my symptoms and also told her I didn't think it was a lung issue, which is usually the case. She listened anyway, thankfully. She told me there was no air moving in my lungs. No wonder my breathing was labored. She said that I had inflammation in my body and put me on prednisone taper starting at 60 mg for 2 days and reducing by 10 mg every 2 days. I also was prescriped Larazapan(?) to help me sleep. I was instructed to come back down in the morning to have my blood pressure rechecked.
But for those of you who remember my first post – my mom has a blood pressure cup machine. So, she brought it over to me and I took my own bp at home throughout the evening and the next morning. It steadily dropped and by the next morning I was 127/77. Now, I am back to 100ish/70ish, normal;).
Apparently, I did have an inflammation of some kind that was causing my entire body to ache. By the next morning, I felt 80% better. No achey joints (that prednisone is definately a 2 edged sword). It worked it's magic on my joints and in my lungs. I am done with my taper now but when I went to see my lung dr. on 9/14 he diagnosed me with asthma! So, since 9/14 – I have been using Advil 2x/day along with 2/3 treatments a day with Xopenex and Albutural puff as needed. I do feel better so maybe I do have asthma on top of everything else.
I know I sort of got away from my reply to your issue. What I wanted to tell you is that I continued with my minocylcine 100 mg. 2x/day during the course of prednisone and I didn't have any problems at all.
Hope this helps.
Take care……Alli
Lynnie,
That was very insightful information regarding JH. I have been wondering myself if the minocycline is not as effective on me as others because I don't think I have herxed. There are somedays when I am extremely tired and occassionally my joints are tender but I have found that it is not anything too different than prior to starting AP.
The good news is that I am getting better. I have yet to post all of my last results from my 6 month visit to my lung. For now I will share that my echo results are: 9/2010 pressure: 36; 9/2009 pressure: 58. Hmmmm, my dr said, “has to be the Tracleer!” Will post more on my visit soon.
Take care…..Alli
Hi Richie,
Your message caught my attention. I have not read the article that was posted by Vicky but wanted to share some statistics that I am aware of. I have an uncle who is very proactive in bringing water to our small communities/reservation. In his research and journey in helping to secure “good” water, he discovered that at one time there were 12 people in our area that had scleroderma.
We thought that was very interesting. So, environmental, genetic…who knows for sure. I have sworn off our water for drinking for years, even though they claim it is safe. We also have a lot of people here with RA. My aunt had it real bad most of her life. She passed on a couple of years ago. She had rheumatic fever as a child, which my mother said was a precursor to a lot of her medical issues.
I am of native american descent and found it interesting that there were that many of us with the disease. I found out quite by accident years ago that there were 2 white men, that we know quite well who have it. I always thought that was different because according to my first read of the disease it was a disease that struck predominately women. I see one of the men every now and then. He and my husband used to do a lot of work together. We supplied the concrete and he was the contractor. I remember how hard the work he was doing was on him but he never seemed to let it take control. The other man, I haven't seen in years. I need to find out how he is doing.
Thanks for listening….Alli
Hi Maz,
I spoke to the pharmacist at Curascript, which is where my Tracleer comes from. He said that he had never heard of it used for people with autoimmune diseases or lung issues. He stated that it used as to help ppl from abusing drugs. At the time we were speaking I did not have the site up or I would have told him that FDA did infact approve it in helping to boost the immune system.
I talked with my local pharmacist and she said there is a compounding pharmacy in Siuox Falls who could mix it up accoding to what my dr. prescribed. Apparently the mix is very important. Dr. S. should know the correct amount, shouldn't he? When I asked him about the drug, he said he could prescribe it as he did have some patients who it helped a lot and some who it did nothing for. I forgot to ask him if I should be weaned off Cellcept, I will do that in my next email to him.
Should I be concerned about any side effects from the drug if I do start taking it? And what is the difference between this drug and NAC, is one of them better for me and my condition than the other? When I asked my family doctor about NAC several months ago, she stated that it was used to help patients that had overdosed on tylenol. This can all be very confusing.
Thanks….Alli
Red Rock,
I emailed Dr. S. and he said that he would prescribe LDN for me but we needed to work with the compounding pharmacist to make sure it is mixed correctly. What I haven't gotten a chance to ask him is if he knows what that exact mix is. What amount do you take and was there any difficulty in getting your insurance company to pay for it?
Alli
Thanks Maz,
You are a wealth of knowledge. I appreciate your suggestions and will talk more in depth with Dr. S. I sent him an email earlier today but have not heard back from him as of yet. He is such a busy man.
I did a little bit of reading on LDN this morning however your explanation was very reader friendly. I understand what you are saying. Wouldn't it be great to get off the Cellcept? I personally don't think it has done much good with my lung issues. I think it is the key player as to why my blood pressure is so low all the time, well that an the lasix. I was always a 120/80 girl but since the cellcept, tracleer and lasix my pressure run 80 to 90/ 58 to 60.
I will let you all know what I hear back from Dr. S and will also send my pft results as quickly as I can get them.
Thanks Maz – do take care……Alli
Hi Red Rock,
I am not very good at manuevering around the site so I answered some of your questions in my reply to Parisa.
Please bear with me and thanks for your questions regarding LDN. I am definately going to inquire about it.
Take care….Alli
Hi Parisa,
No, I have not tried LDN. I asked my lung dr., rheumatologist and primary care physician about it as well as NAC but none of them seemed to know what they were, strange maybe?
I am going to email Dr. S. to see if he thinks I would be a good candidate to take the drug and if so then maybe he can help me acquire it. According to what I've read online and on here it seems to be a key factor.
I am still on Cellcept, 1000 mg a day. I have been taking both Cellcept and Tracleer since December 2007. My first pft's did not indicate any improvement after starting the drugs, as a matter of fact the results were my worst. After starting AP, my first full pft's showed significant improvement. Which is why I am excited for my appointment next month. If Dr. S. does prescribe LDN, I will wait until after the lung appointment to start taking it. That way I can keep an accurate accounting of my improvements and to what in particular has helped.
Thanks for your reply……..Alli
Hi Parisa,
That's great news and extremely rewarding! I go back to see my lung dr on Sept 14th. I am scheduled to have full PFTs, a CT scan of my lungs, and an Echo. I can't wait. My last IV treatment with Dr. S was in June and I continue to take mino 100 mg 2x/day.
I am hoping for big improvements like your husband has had. Although, I must admit I don't feel anywhere near as good as I did after my first round of IV treatments last November. Not sure why but will be patient.
Take care and thanks for sharing the wonderful news!
Alli
Hi Red Rock,
I had a right heart cath done a couple of years ago. I was not on LDN or much of any type of medicine at the time – Nexium was probably the biggie. I was awake during the procedure and I pedaled a bike during the procedure. They wanted to monitor the pressures with and without exertion. Everything went well, it was all over within an hour.
They started the catheter in my neck and I was able to watch as they guided it to my lung/heart (wherever it had to be to check pressures). The only sign I had at the site of insertion was a little red dot which went away after a week. I may be getting another one done this fall and I'm looking forward to it. It would be great to see if my pressures got better after being on the minocycline for nearly a year. I'm keeping my fingers crossed for noted medical improvement!
After the RHC and diagnosis of APH, I was prescribed Cellcept and Tracleer. In November of 2009, after seeing Dr. S we added minocycline to the mix.
Good luck with your procedure.
Take care…….Alli
Kim
Thanks, I will be looking for it this next week as I pass through Sioux Falls and Sioux City on my way to see Dr. S for round #2!!! Now, I don't care much for coconut taste but I love the smell. Looking forward to trying it.
Hope you're having a great summer…..Alli
This is great news. I am going to buy some as soon as I get to a big town. I can't wait to start using it both orally and topically. I wasn't sure until Kim's post (thank you Kim), which one I should use for my skin but cooking oil it is.
I also called a very good friend of mine who appears to have psoriasis in her scalp (but has not been able to get a diagnosis). She is vacationing in Washington and is going out to buy the stuff today! Sure hope this works.
Thanks for the info!
Alli
You truly are an inspiration. Thanks for sharing photos of your special day. Your beauty and courage radiate – you are as beautiful inside as you are on the outside. Happy, happy birthday Maria and many, many more!
Alli
We had very high humidity here yesterday and I had an extremely difficult time breathing. As a matter of fact I took off work, went home to bed and put on my oxygen machine. Once the wind picked up it sort of blew the humidity out and I felt a lot better.
In regard to joint pain or inflammation, my husband asked me if my wrists were sore because I kept stretching them. Funny, I hadn't noticed that the joints in my wrists were bothersome – I guess worrying so much about my next breath sorta takes the worry out of other things. But in answer to your question, I think it does affect my joints as well.
Take care….Alli
