Home Forums Personal History and Progress Threads June’s Scleroderma & AP

This topic contains 6 replies, has 1 voice, and was last updated by  June3443 5 years, 4 months ago.

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  • #306430
    June3443
    Participant

    My older brother (81) has had scleroderma for 40 yrs so I was aware of the disease and symptoms even tho we had been told that siblings did not have scleroderma too. I didn’t realize my early symptoms were connected to SD. I developed an irregular heartbeat in 2001 and prescribed atenolol 12.5 mg to regulate the PVC’s even tho I had low blood pressure. Also about that time I got carpal tunnel symptoms in both thumbs. In April 2009, I had a bad cold/flu and also handled some pesticide. Soon after I had my first Raynauds attack. Then I noticed my face was swelling and I had rosescea. I had red patches under both arms and on face. My feet and hand started swelling and were sore. I asked my primary care dr to test me for SD and by the time they drew my blood, it would hardly come out. Dr changed my med to diltizam which is a vasodilator to help with Raynauds and scheduled me with a rheumy who couldn’t see me for 2 months. My symptoms were getting worse fast so I found RB. I was able to see a derma dr who gave me doxycline and a jell for my face. I dont know if he k ew about the AP or if I just got lucky.

    I took the Harvard study to a derma dr at the teaching/research UAMS and ask to try the mino. I quickly saw improvement. At my first rheumy visit I showed him the study. He knew the dr in the research. He didn’t take me off because I told him I was improving. He did baseline testing. I was already getting pulmonary hypertension. I had to have a brace to sleep in at night because my hands would go numb. I had terrible night sweats and then I would freeze and have a Raynauds attack if I went in a store with too cold air conditioning. After my second visit with rhuemy, he said my liver was back to normal. I don’t know what that meant. He was more concerned about treating whatever problems I would develop later instead of finding out how to stop it.

    I also had 2 root canals that were not properly completed. I read the thread about dr. Meinig’s writing on root canal coverup. Found a good endo dentist who retreated my teeth; and they were infected. I was determined to rid myself of infection

    I continued with minocycline and stopped everything else. Then I gradually added back. Ibuprofen seemed to help also. After about a year, I went from 100 mg 2/day 7 days a week to 100 mg MWF. After 6 mos or so I stopped altogether. I started having hip pain and got a shot for it. That helped for awhile and the the pain returned. I also started having severe muscle spasms in my hands and feet. I started back on the mino about 2 weeks ago and my spasms are gone and hip is better. I had started having intestine problems with constipation. It seems that my intestines are constricting. I usually take miralax and metamucil for that but I got off schedule and created a problem. My last colonscopy showed I had diverticulitis. I am having another tomorrow to see if anything has changed.

    I seem to be having extremely sore muscles in the calves of my legs. It seems to be more than just muscle strain. I haven’t done much to make them sore. I don’t know if this is a problem with the medicine since I just got a new prescription of Ranbaxy minocycline or if it something like hexing because I was off the med so long. Right now that is my main complaint which is pretty good.

    I plan to get an appoint with Dr.K in Lufkin to follow up in case I need to take another antibotic with the mino..

    My sister also had scleroderma. She probably had minor symptoms before she got sick last year. She developed vasculitis neuropathy which I think was caused by her Sjogrens and scleroderma. She was treated with predizone and cytoxin. Her rheumy wouldn’t try the AP. I think the drugs were too high doses. She passed away 1/6/12. She was 76 years old.

    #361775
    June3443
    Participant

    My colonoscopy today showed only mild diverticulosis in the sigmoid colon. No other complications. Better than before I took the mino. Next recommended test in 10 years. 🙂

    I noticed on my upper thighs lumps under the skin and tightening in that area. I remember some one posting about collegan forming in the tissue and deep tissue massages helped. I started massaging the area affected and noticed i could get relief and the lumps seemed to go away. I am better with the tightening today. Will continue with the massages.

    #361776
    June3443
    Participant

    I have been back on the mino for about a month now and am almost symptom free again. My muscles are no longer sore. I had my colonoscopy and only mild diverticulosis in lower colon. Doctor recommended another one in 10 years! An earlier x-ray of my hip showed bone spurs around my left hip that has been giving me pain. I play a lot of golf and had stopped taking extra calcium which I believe caused the problem. I have started taking supplements and with the mino helping stop the drawing of the muscles and tendons in that hip, the pain is getting better. I am to have a bone scan when I return to my primary dr in May as a followup.

    In 2007 before I knew I had SD, I developed constant constipation. I blamed it on the calcium supplement I was taking. I had to have surgery for a fistula in 2007 and then in 2010 had surgery for rectocele/cystocele. I had been on the mino for about six months. I started on the fiber then, but not faithfully. I am now.

    When I first went on the minocycline, at times I would have pain that moved around my body. One time I thought I needed a shoulder surgery and then it moved to my knee and I thought the same thing. Then, one day I realized the pain was gone in both. Same thing with my hands. I had to have splints made to sleep in for awhile and my thumbs were so sore with carpal tunnel. Don’t need the splints any more and have very little pain in my thumbs/wrists. I had the nerve tests for carpal tunnel and was told that surgery wouldn’t help my condition. That was before I started the minocycline.

    I still have a tight tingly feeling in my lips. Feels a lot like when you go to the dentist. For awhile the cartilage on both sides of my nose was very sore, but now that has gone away. It seems the cartilage has thinned but not enough to matter.

    In November 2011 I had a heart ablation to correct the PVC’s that were causing my irregular heartbeat. Surgery was very successful and I no longer need a blood pressure med to regulate it. I was having some swelling and breathing problems before the surgery…some from the medicine.

    Most people have a problem believing I have anything wrong with me. After my sister passed away with SD, it brought more awareness to the disease. The only real pain is in my hip mostly at night when I go to bed. I consider myself to be a very fortunate person.

    #361777
    June3443
    Participant

    After 3 months back on mino, I am pain free again, except for the bone spurs on my hip. That seems better but am going to see a Orthopedic dr soon. I had a chest X-ray which showed a nodule in my lung. Had ct scan for followup. Two different oncology radiologist read the scans and determined it was not cancer but scarring possibly from SD. All my other tests were great . I feel better than I have in years. My primary care doctor has agreed to follow my SD and I am not returning to my rhuematologist. PC dr says she has another patient with SD who is also doing well on minocycline.

    #361778
    June3443
    Participant

    Update. I returned to my rheumy after all. Had a pulmonary test that showed I had a little loss in function but still stable. Recommend retesting in 2-3 years. I have started doxycycline hyc 100 mg 2x day instead of the minocycline. It is the generic by Mutual. I am hoping to avoid the skin pigmentation problems caused by minocycline. Hope it will be as effective as mino as I no longer have the muscle pain and spasms.

    When I told my rheumy how well the mino was working, he said he thought I had a “mild” case of SD. I thought “yes, because I am on minocycline.”. He said my nailbeds looked pretty normal. No blood work there.

    My thyroid TSH was elevated from 2.2 to 4.4 but further testing showed my T3 and T4 to to be normal. My hair has been falling out and the texture has changed so I have been taking vitamins and my dermy gave me a cortisone lotion to put on my scalp.primary care dr said no to thyroid medicine.

    I notice small holes on my face where the fat seems to be disappearing…aren’t noticeable to others. Have a gel for rosacea that I have been putting on my face.

    All in all, I am doing very well.

    #361779
    June3443
    Participant

    I began noticing bluing and “liver” spots on my ankles so primary care dr prescribed doxycycline 100 mg 2/day but after awhile some of my old symptoms began coming back so the dr. And I agreed for me to take 100 mg doxycycline AM and 100 mg minocycline in pm. I decided to see a doctor who prescribes AP and after looking at my ankles decided I should stop minocycline altogether and added clindamycin 150 mg 2/day along with the 100 mg doxy 2/day.

    After being on the clindy and doxy for about a week I noticed the scar like place on my cheek seemed to be getting bigger. Thought it was my imagination so watched my face closely for a couple of weeks. The scar was pitting and getting larger and I was developing another one on tbe other side. After one month on the clindamycin and doxy, my dr has me trying minocycline again…only 100 mg a day this time. She has recommended I limit my sun exposure, too. Must wear full hat, long sleeves and pants, and gloves. also, not to use sunblock..not sure about sunscreen.

    I have noticed that my muscle cramps are trying to come back as well. I think the Raynauds in my feet has gotten a little more noticeable. I haven’t been off minocycline but one month and I can tell I miss it!

    I will have a followup doctors visit and labs in a month unless I have further problems.

    #361780
    June3443
    Participant

    Finally sent my blood samples to the researchers at the University of Texas for the Scleroderma DNA registery.

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