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Greetings fellow patients,
I am happy to contribute to this forum to help and learn from others. I am thankful that it exists to help my on my journey and goal to heal strong.
My Morphea lesion came last July 2019 at the age of 51. It was on my left abdomen. I saw my Dermatologist who knew what it was as soon as he saw it. He did the biopsy to confirm. He gave me chlobestasol cream to apply daily and told me that it usually goes away in 3-5 years. I had no idea that the worst was yet to come. After a very stressful last part of the year, my Morphea started to extend down my body. I had severe muscle body pain all over. It was like as if I went out cross country skiing and felt the deep pain afterwards. My body had also gained enormous weight in the last few years even though I didn’t eat much different. I didn’t know what was happening.
January 2020 my legs, ankles, feet, forearms, wrists were starting to swell. I went to my nurse practitioner. She had no clue and told me to see either a rheumatologist or a neurologist. That started my dealings with several doctors who had no clue and referring me to someone else. This was very frustrating and confusing.
By mid March, I couldn’t take my body swelling to scary proportions, aching and now my walking was being impaired. I had to stop working. I luckily was able to find a mineral, zeolite which took away all of my swelling in just 2 days. This gave way to the hardening of my skin from my elbows to wrists, upper legs down to my feet. My mobility was impaired and my quality of life hindered. I had so much hair loss and now my body was shrinking. I had a weight loss of 48 pounds in a very short amount of time. I had told my rheumatologist at the time and got him to finally prescribe me MTX.
After seeing at least 5 doctors and a trip to the ER, I went back to my original dermatologist in April. By this time my morphea lesion had changed color back to light brown. He added prednisone to my treatment plan and referred me to another rheumatologist. I was told in AZ there is a shortage of rheumatologists so the waiting time to get in was 2-8 months. Wow, I was experiencing such agony and suffering. I can’t imagine what other patients go through who have this disease or any other severe illness. My heart breaks for them.
I finally got in to my new rheumatologist in July. She was very young and didn’t have much experience with this disease. Luckily she referred me to the dermatologist in her group that specialized in skin diseases-auto immune related. I got in to see her in early August. I had read the scleroderma book and had it in hand and the AP that I wanted to try. When I told her, she was open to it and said that she had great results with doxycycline. She increased my MTX, prednisone along with the doxycycline. She was very encouraging and supportive. I was thrilled to have found someone who knows what she is doing.
It has been almost 4 weeks now with this new treatment plan and I can see and feel some improvement. It is slow but the purple/red marbeling down my legs looks better, skin is feeling like it wants to get softer. I am confident this can leave my body.
My question is, can I just be on doxycycline by itself? I don’t like suppressing my immune system. I also don’t want to get any side effects or damage to my organs by being on prescription drugs.
Also, can anyone tell me how long it is until the joint contractures and skin softening takes? Will I be able to walk and function at full capacity again? I miss my active life.
Thank you and may you have a restful and pain free day.Hi Lakegirl,
It’s great that you found AP and have already got settled into your road back! Way to go! Fortunately, you also live in a state with a number of AP doc options, one of whom was on the most experienced list, retired to focus on research in his lab, and recently came out of retirement to offer telemedicine. So if you would like an experienced doc who can test for microbes, and individualize a protocol for you, he may be a good option. Have you found the Doctor Search page on the website yet?
People can and have been able to incrementally taper from their other meds over time, but it’s good to find a doc who understands the therapy in order to guide one through the process. Prednisone tapering can be very tricky and take time, as going too quickly usually results in rebound pain. The adrenals produce between 5-7.5mg of natural cortisone a day (that is why it’s called a physiologic dose). However, when exogenous cortisone is administerd, the adrenals go into dormancy and stop producing natural cortisone. This is why stopping or tapering too quickly can send one into adrenal crisis. There are carefully titrated methods to slowly reduce prednisone, so it can be done, and it’s just a very individual process. Those with lots of unresolved inflammation need to be very cautious and take things slowly under doctor supervision (and one who understands the nuances of rheumatic disease).Most people want to get off prednisone first due to its cumulative side effects with long term use.
At one month in on AP it may be a little premature to consider stopping the other meds as the first few months are typically when herxheiner reactions occur. It can be a double-whammy to experience a herx and rebound.
All in all, generally speaking (as each individual improves at a different pace depending on numerous variables, like age, disease severity/duration, type of antibiotic protocol, hormones, ability to detox, lifestyle choices, diet, etc. So it’s a good rule of thumb to view the first year on AP as the time during which one tries to slow down the Scleroderma freight train. Once, it slows in progression, incremental improvements begin occurring.
AP is a verrrrryyyy sloooowww therapy and there are rarely overnight miracles. Quite often, too, supportive therapies may be needed, as well as cleaning up the diet to improve nutrition to help the body to heal, to learn how to help the body to detox from circulating toxins (something the body finds hard to do when compromised by ill health, adding supplements like pre- and probiotics to help preserve gut health, etc. it’s a learning curve, but withinna few months you will feel much more confident in the path you’re on and will learn how to tweak things as you go. Although tetracyclines are classed as rheumatic DMRDs, AP isn’t immune-suppressive in the same sense as other rheumatic meds (more immune-modulatory). So, it can be a bit of a two step forward and one step back dance all the way to remission once other meds are finally dropped.
This forum is full of every question you can imagine, so feel free to use the search box above, using key words to look up previous discussions on topics of interest to you. The forum goes through busy and quiet periods, but it doesn’t mean no one is here. Old-timers check in frequently so hang in there if you post questions and find you have to wait for answers. If you click the box to receive notifications of replies at the foot of each discussion thread, you’ll be notified by email every time someone answers something on a thread you’ve created (like this one) or would like to follow. Otherwise, check back as frequently as you can. AP requires a degree of self-advocacy, but it will all be second nature to you in no time. In the meantime, in these early days, try to read the books to understand the treatment rationale, as well as all the resources on the site. You’ll find friendly fellow-patient support here!
Hey LG,glad to see you are here now.A little tip here,when you get down to your last pill of MTX or Pred use a nail file to trim a bit off each one until you are totally off them.I was scared shitless to stop them but it worked just fine.In case you did not know this,pred makes the skin very,very thin.Mine rips if I even rum a bug bite.I was on pred for a year,worst mistake of my life but I did feel so much better. Lynne C.
Hi Lakegirl,
Sorry you are suffering but I am glad you found this treatment and someone willing to work with you . May I ask if you had a full work up by your rheumatologist ? I believe there are 10 scleroderma antibodies with the scl70, rna poly iii, and centromere being the most common . I believe ANA is usually negative in localized scleroderma .
4/19 symptoms onset
UCTD , 1:40 ANA Speckled, Now negative
Mycoplasma P IGG IGM, EBV, HSV1, Igenix Bartonella IGG
Doxycycline 100mg b.i.d. , Bactrim ds 960 mg b.i.d. , Biodisrupt, fluconazole 100mg q.d , Monolauren, Visbiome probiotic 112.5b b.i.d ,B-complex, Vitamin D , Quercetin, saccharomyces boulardii, raw garlic , paleo, WHMThank you Maz for your reply and support. I truly appreciate the advice on my condition.
I did see the doctor search page. I will see how this doctor I currently have works for me first then I may seek another if she doesn’t.
I am glad to have found this forum.
Best regardsHello Lynne,
Thank you for your support and advice on my condition. I also have very thin skin now. My dog jumped on my arms and it was so easy for her to break the skin to have blood come out. Yikes.
Sending good health and healing to youHello Vincentpre23,
I appreciate your support and advice. My 1st Rheum did a work up but he was so confused and told me that he never saw anything like this before. Yet he had been in the field for over 30 years. My 2nd Rheum I am not too impressed with. I am left with just trusting my Derm to treat me. Ughhh!
Hoping to heal strong.
Sending you good health and healing.
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