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starky Posts: 9
New Member
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Hey Raimond, Macker. I've become my own advocate with T.H.S. I wanted "Macker' to hear this, since it may apply' I suppose I need to say, I'm presenting information that the Medical community may not agree. So, this is my second 'go round' with T.H.S. I was hit ten years ago at 53 years old for the first time in my right eye. Almost ten years to the day, I relapsed. This time, my left eye. That rose a few eyebrows with doctors. So, since February this year, here's the the way the T.H.S. specialist dealt with Prednisone. 50mg.- 4 days,45mg.- 4 days, 40mg.- 4 days,(It was here that my symptoms were poorer than at 45mg. so the doctor said go back to 45mg. this time for 10 days, after 10 days back to 40mg. for 3 days. Once again, at the end of the third day I felt the symptoms were coming on stronger: again, I told this to the doctor, and back up we went again, 45mg. for 14 days,at this point, he felt we go drop down again to 40mg for 8 days,by the end of those 8 days, i was losing ground once more to the symptoms, then i was told to go back to 45mg. for 16 Days,when once again, something of a relapse, especially the vertigo, double vision symptoms.Here, the specialist was supposed to call and see how these last 16 days went, but after calling him my call was not returned, in spite of call backs from me. I talked to my wife and family doctor and we thought, lets start again so to speak. For the last 3 days I've been taking 50mg. By the end of today, I can actually feel a positive 'jump' to my general health, and specifically the vertigo aspect. So, that's the plan. I'm going to run with the 50mg.and see if I can sustain a longer attack on the symptoms and hold them 'there' before I start dropping the dose. When I do drop the dose, instead of dropping down by 5mg, I'll do it in 2.5mg. increments, and so on. while I,ve been on this regimin I've been taking 10mg. of Methtrexate once a week. Perhaps some folks may after they read this, may say, "Yikes,me running my own show sounds irresponsible". Remember, this is my second go round here in ten years, I'm beginning to feel what's working and when. Presumably, one's dose on Prednisone is decided partly on one's weight. I started at 160lbs. After 3 months I'm at 173lbs. Ah, weight gain...another hallmark symptom along with insommnia. I also have daily headaches which I'm treating with painkillers. I have blood tests every 30 days for liver, kidney, and blood sugar levels. I'll keep reporting to 'our T.H.S.' site. Perhaps I've been where others have been, and we can feel a little bit better about this brutal syndrome. I'm not saying do what I do, but it could help with your specialist where it hasn't with mine. Hey, I beat it 10 years ago, I'm confident I can do it again. And should I relapse after this to fight it a third time, so be it, I'll be that more savy. I'm looking for a reuminologist, that assignment wasn't forwarded until a month ago by my T.H.S. specialist. Good grief. All the best Raimond, Macker and anyone else who may be interested in my second time around. We need to find anadvocate, or be our own. Cheers every body, Starky. Previous discussions I participated in: My Story |
