In His Grip
AlwaysRosie "We can't control the waves, but we can learn how to surf!!"
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UCTD, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis
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Thank you for both for your reply and encouragement. Although I have been diagnosed since Nov 07- I know very little about my bood levels anti-bodies etc.
I suppose my mind immediately went to what can i do to stop this disease from progressing, and I remain fixated on that. I do have wonderful Doctor's
who are extremely supportive (half the battle I hear from others), and am currently on medication (prednisone 15mg initially then on a declining dosage, and Plaquenil 400mg first month and now down to 200 mg since). I felt like wonderwomen the first week of prednisone, but have noticed more and more aches and pains while declining. Currently I am on day 2 of 2.5 mg Prednisone, and I feel awful. My arms ached and were numb all night and most of the day. My hands and wrists joints are aching. I have heard that Plaquenil takes awhile to start working, and am wondering if it is still early for me to feel the effects of this Medication (started Nov.21/07), or are these problems I am experiencing happening with the plaquenil working.
Hearing others experiences is welcomed
I am one with MCTD. I was diagnosed about 3 years ago. I have only taken pred one time and only for a week because I have high blood pressure also and my rheumy doesn't want to mess around with that. I know it is hard to find specific info about MCTD but basically it is treated just like Lupus. I take plaquenil and also am taking methotrexate for it. I take Vicodin for pain when it gets too bad. I am also diagnosed with 'fibromylagia which adds "interest" to the whole experience.
You have come to a great place to get info and encouragement. Everyone here has been great with me and very encouraging. I know that there is one man, named Bill, who has quite a story about MCTD. Hopefully, he will share with you his ordeal and successes. Please ask questions and we will try and help as much as we can.
Hi Ginny and Mary Ann-
I too have fibromyalgia. I was diagnosed with this in 1997 and always managed well with it, and actually when I started to get sick a year ago, my GP and myself thought it was the fibro kicking in really bad, but by the spring my bloodwork was revealing alot more. My diagnosis is Lupus, Scleroderma, and polymyositis. The main problems I have are upper body(especially arms) aching, and numbness. Wrist and finger joint and knee pain. Also, I tend to get an eczema type rash on the index finger of one hand, and a red patch over the knuckles of the other. As I mentioned when I took the 15mg of prednisone I felt great, and even functioned extremely well with 7.5 mg.- My pain really started coming when I got down to 5mg. and like I said I feel awful now on the 2.5 mg. My Rheumy told me my case was mild and he expects that by the end of March I will feel as good on Plaquenil as I did on the 15mg of Prednisone. When I started feeling like I was hit by a bus, I got online and googled plaquenil and mctd, and I was directed to the posts written by "Bill"- and others and I knew this is the place I wanted to be. You see I have tried desperately to find info, support groups etc on this disease without having to hear constantly about the doom and gloom. I need encouragement, and really want to converse with people who are optimistic, and learning to live well with this.
No, Im not a small girl (5'7" 190lbs)- I didn't realize about the Plaquenil (I really am a newbie). His complete RX was Plaquenil 400mg for 1 month then 200 mg thereafter; Prednisone was 15mg for 1 week, then 10mg for 2weeks; then reduced by 2.5mg every 2 weeks. Thank you for the link, I am going to look at it now. I did know about the sun, and actually I am fair, so I have never really been able to handle it anyway.
I do have a call into my Rheumy and expect to hear from him today, so hopefully one of these meds will be increased. I do have a question though-do the majority of people have successful results with Plaquenil?
Thanks for posting Bill-
As mentioned earlier it was reading your post while googling that brought me to this forum. Your story and attitude is truly inspirational. As for me, my symptoms initially were upper arm, shoulder girdle aching; numbness in lower arms and fingers; painful knees (couldn't bend them without severe pain); swelling of fingers and between knuckles; painful wrists; rash on finger and knuckles. Within a few days of going on 15mg Prednisone and 400mg Plaquenil, I became symptom free. As my dose of Prednisone was reduced I slowly started feeling aches and pains here and there, but it wasn't until my dose was reduced to 2.5mg that I felt terrible. Regarding my Rheumy, he is my second and actually I found him through a search. He is the head of Rheumatology for a network of 3 big hospitals in Ontario, and Head Scientist for Arthritis and Autoimmune Research Foundation. Plus he is a Professor at a major university, so I have always felt I am in great hands. I didn't realize about the Plaquenil and meds that are used for MCTD- perhaps there is something else going on with me that I am not aware of as I have admitted that I don't know much about my bloodwork and different antibodies (but I see now that I must learn and be very aware).
I have gotten an appointment to see my Dr. on Monday, and thankfully I did have the sense to record my symptoms on a daily basis as they really do change (Tuesday and Wednesday I could hardly move and last night and today I am pretty mobile with tolerable aching and stiffness).
Bill, a question I would like to ask you is how did you help yourself heal? A recovery like yours must of taken alot more than medicine. I can see that you are a "glass half full" person, but how did you maintain this positve energy when you were really sick? Myself, I am determined to heal, and am prepared to do whatever it takes to do so.
Thank you Always Rosie and Bill-
I realized something after I posted this morning and that is I had given the wrong Mg of Plaquenil. I was iniatially on 600mg for 1 month and now am on 400mg (not 200 as stated) daily. I am on other medication too, so I guess that is part of my mix up. Unfortunately sleep is a problem for me and since last fall I have suffered both anxiety and depression. Actually, I believe that these have been a major cause of my illness to begin with. Currently, I am on Ativan, Imovane (Ambien in the US?), and wellbutrin (anxiety, sleep and depression). Im not giving up on this Rheumy, in fact I have a trust in him (something I didn't have with my previous one), and from reading different posts I can see that proper treatment and dosing really is an 'art'. I too, have a strong will to recover, and a deep belief that we are capable of healing. When I look back at the physical symptoms, I can actually relate each and every manifestation to stressful events in my life, and although I'm not thankful for this illness, it has made me realize that I need to heal alot more than my body. I am 47 years old, and this truly is life altering. For the first time in my life I am seeing all the blessings I have, rather than b****ching and complaining about what I don't have, and I have a new respect for anyone dealing with terminal disease. I feel like I do have a chance at a full, rich life (and Bill your posts encourage that for me), and am learning to accept that if this is what I have to deal with, then I can do it.)
Oh and I am not disabled (just alittle slow when I'm in pain).
I really want to thank everyone for your responses. You are giving me a crash course in learning to be responsible for myself and my health.
Sorry I didn't see your post earlier Always Rosie-
I do have a bag with some type of beans in it and will give it a try. I find that I can dose off to sleep, but am up several times a night and often
only able to get 4 hours sleep without waking (and so often waking with anxiety). I do want off the sleep meds and wonder if anyone has had success with natural products (eg melatonin and 5 HTP).
Thanks again to those who have posted for me- I appreciate all responses and suggestions. I saw my Rheumy yesterday, and is putting me back on Prednisone starting at 10mg for 2 wks and then I will be doing a slow decline (overall 20 wks to get to zero). He said that the Plaquenil should be working by then.
As for my sleep issue, it was here long before my symptoms. I really do believe that the chronic stress and anxiety I lived with really ignited this illness, so my plan is to deal with the root issues that are the cause. Thanks for your comment PattyLatty about being positive- it's funny cause I was never a positive person about many things, but I have learnt at different times in my life that when things happen that I don't have control over, or I get overwhelmed with problems, and I feel I am at the bottom-if I just let go I somehow find this deep inner strength, and then things start working out. What I don't understand about myself is I can name off all the times this has happened, and yet my habit is to try to ' write the script' and fret and fume. Now I am trying to get that ability to 'let go' on a daily basis, and allow my life to heal. Definately going to be a long process though, but like I said I want to live and heal, so I will do whatever it takes, medically, physically, emotionally and spiritually.
One of the first things on my mind is to wean off the sleep aids, and try some of the suggestions given.
Thanks again for your caring, and blessings to all
You will undoubtly get good info on here as there are sooo many experienced and well knowledged people that post. Personally, I am still one of those that doesn't keep track of my levels and I know that perhaps I should, but I just seem to feel better being proactive and going by how I feel daily. When I have bad times I am at the Rheumy's and getting checked.
I too have been terrified of the different meds, and plaquenil scared me because of a prior eye problem I have (toxoplasmosis and cataract). I go to the Optomolgist every 6 months and do a weekly test at home. I have been told that problems from plaquenil can and do exist but is more than rare than the norm. Of course my Dr.'s are more concerned with the Prednisone which I am tapering again, and although I didn't gain weight from it, I'm starting to get the symptoms of Cushings syndrome from it (I will be finding out more next week), so of course this is making me more determined to get off this med.
I'm like you and have always had (and still do ) low blood pressure, but my Rheumy did initial tests just to see if any organs had been affected. The first year had been a real roller coaster for me. Aside from going from feeling physically awful, to great then to awful again, I had major emotion issues with accepting my diagnosis. The worst thing was that I was identifying myself with my illness. I'd wake up everyday and remind myself that I was sick, and this was not what I wanted to do. It is hard but I am doing everything I can to detach from the label, and things are working well for me. Yes, I still get stiffness etc. but I am determined and optimistic. My Rheumatologist was amazed at my improvement on my last visit. He is a Scientist, but believes (as I do) in the mind body connection. Actually during my first visit after he did tests, he asked me what had been going on in my life at the time. I was floored because I had been through a devasting 2 years. He wanted me on anti-depressants and to go for counselling. Both these have worked great for me.
Anyway, I am babbling, but reading the stories on this forum and getting advice for the one's who have been there is such a blessing, so keep posting.
I wish you the very best and my prayers are with you