Posted 09 September 2010 - 04:15 PM
Also, have any of you been on Prednisone, and if so how did it work for you? What was/is your dosage? How long did it take before you began to feel better? I've was on 10 mg until yesterday and I asked my doctor if she could up the dosage thinking that this may help more. I don't know if it was psychosomatic or what , but the first couple of days I really felt like it was working, then on the third day I crashed hard and felt even worse. She upped the prednisone to 15 mg and I'm still feeling really rough. A tiny bit more energy, but otherwise still really, really, rough.
Thanks in advance for any responses. Thanks again for all of the support and responses to my other nagging questions!
Peace and Blessings,
Posted 10 September 2010 - 05:53 AM
Welcome to the forum ( sorry I didn't get around to welcoming you before!! )
I can't really help you with the finger problem; I do have Raynauds quite badly and sometimes the tips of my fingers are red and shiny but certainly not as painful as you describe.
My fingers were very swollen which leads me onto your next question. I've been on 10mg of Prednisolone since July 2009 and to start with I was very impressed with the anti-inflammatory qualities it had. My joints stopped aching, my fingers went back to their original size, my lung function improved and apart from feeling that I was swinging off the chandeliers on it for a while I didn't suffer any side effects in the beginning. However having been on it for a year I notice that I have sadly put on weight on my stomach and my skin is more fragile than it used to be so I'm not quite so ecstatic about it as I was!!! I've actually been told by my consultant to cut the dosage down to 7.5mg which I've been doing since the beginning of the month; it hasn't really made any difference as yet but I obviously want to be on as low a dose as possible.
I'm sorry that you still feel very rough and do hope you will soon feel better; it might be worth you returning to your doctor again to see if she could suggest something else if you feel the Prednisolone isn't working.
ISN Assistant Webmaster
SD World Webmaster
ISN Sclero Forums Manager
ISN News Manager
ISN Hotline Support Specialist
ISN Chat Host
International Scleroderma Network (ISN)
Posted 11 September 2010 - 12:50 AM
I can't help you with the finger issues, I have only mild Raynaud's and no skin or cuticle issues.
I have however been prescribed prednisone many many times due to my asthma, but the drug also helps the joint pain and fatigue tremendously for me. I feel better within 48 hours of starting - but my starting dose is usually 30 mg a day and I taper off gradually from there. I lose the pain and fatigue benefit any lower than 15 to 20 mg a day. My rheumatologist is very adamant about getting me off the steroid as soon as possible, I've asked why they can't treat the pain and fatigue with it long term, as it works so well for me, but he says the side effects of long term use, especially at a relatively high dose of 20 mg/day, are prohibitive. Side effects/risks - renal crisis, GI bleeding (and I've already had this twice), bone density loss, risk of cataracts... he went on and on so I guess I need to believe him!! Also a major side effect - weight gain -- oh yes! It's a guaranteed 5 to 10 pound gain for a 2-3 week course for me, which I can never understand because I'm much more active when I'm on it, you'd think I'd lose weight! Bummer!
Hope your doctors can adjust your med regime so you're more comfortable soon!
Posted 11 September 2010 - 12:00 PM
I'm sorry to hear about your fingers. I have limited sclero with Raynaud's phenomenon. I have never been on prednisone, but I have had to increase the doses on the medicines every year since I was diagnosed. I am on amlodipine and pentoxyfillin and I use a topic nitro cream.
With my Raynaud's I have had a finger swell up very badly to the point that I could not bend it. I don't know if it will help, but here are a few things I have done to get relief:
Soaking the hand in warm water
Covering whatever open ulcerations/wounds are on the finger with antibiotic ointment and wrapping them in bandaids (I would suggest this for your cuticle that was bleeding maybe).
Using a warm heat pack on the hand
Again, I don't know if any of it will work for you. The shape and look of my nails and fingers has changed since I started with symptoms. My cuticles definitely get dry and stick out more than they used to.
Good Luck and Warm Hugs,
Posted 12 September 2010 - 01:53 AM
The bump/swollen, redness has gone down a good bit and is not hurting near as much. Does that kind of thing happen? Something else that's happened is where I was getting these dry "bubbles" on my fingers, one has turned pitted and red underneath. At any rate, I did get my rheumatologist to call me in the medicine for the Raynaud's, it's 30 mg of Procardia. I've only been on it a couple of days so I can't tell if it's working. I had a horrible day yesterday and last night with all over pain, and because the weather is changing here, the cold really got to my hands and feet as well.
Perhaps the dose of Prednisone is too small? I am to see the rheumatologist again this coming Friday. Feels like an eternity. Last time when I asked her for something stronger for the pain, she told me that I was already taking "too much for pain", and that "You're going to wreck your liver if you stay on that much pain medication long term." I just don't know what else to do being in this much pain? It took everything in me to get through this week with homeschooling, and it was only a four day week, and my Mom helped with the Twins and cooking. I'm talking to the choir on this one though, aren't I? Bless all of you who've dealt with this for so long!
Thanks again! Peace and blessings,
Posted 12 September 2010 - 06:44 AM
Like many of the other responses, I really don't have an answer to the finger pain and redness problem. I am glad to read that the pain is subsiding. I hope it continues. During my first year, my fingertips would turn red and were extremely tender. If I bumped them, it was quite painful. But that just disappeared.
I was on 10 mg of prednisone along with 25 mg/week methotrexate for 3 years. I felt the effects of this combination a couple of days after starting. That was really the last time I had the "extreme" fatigue that I had prior to diagnosis. After 3 years I was weaned off the prednisone and have been prednisone free for almost 4 years!!!!! It's been great. My rheumatologist refused to go beyond 10 mg/day on the prednisone because he was aware that Prednisone has been associated with renal failure in scleroderma patients. You might want to read about it on our Steroids page. Be sure to check out the article in the Renal Crisis section. Before increasing your dosage, please discuss this with your doctor. I hope you find a solution to your pain and fatigue.
ISN Support Specialist
(Retired) ISN Assistant Webmaster
(Retired) ISN News Director
(Retired) ISN Technical Writer for Training Manuals
International Scleroderma Network (ISN)
Posted 15 September 2010 - 04:32 AM
As has been mentioned, your Prednisone dosage may be too low. When I had my first serious inflammation attack, I was put on a Prednisone regimen that started at 60 mg and reduced by 10 mg each day. A few hours after the 60 mg dose, I went from barely being able to lift my head from the pillow to sitting up in bed, planning a list of activities for the day. A seemingly miraculous change. However, when the dose was down to 30 mg, my symptoms returned.
As Red has mentioned there are many dangers with this drug. It can effect your mood (it gave me a very short temper; my doctor said "oh that's just syeroid madness"). Some people have been known to get into a great desire to scrub down the entire house with a toothbrush. It was presumed to cause an avascular necrosis in my hip, which necessitated a complete hip replacement. These are reasons why most doctors want to get you off the drug as fast as possible.
Posted 16 September 2010 - 03:34 PM
Posted 17 September 2010 - 11:44 AM
I've only taken prednisolone once, due to a plaquenil reaction, to calm things down but it was only for a week. I'm a nurse and know only too well this is not a long term fix at all. In fact the benefits we get can come at a high price later. Each person is individual and so is the treatment we are given.
The following have helped when my fingers hurt/swell (2nd year coming up since diagnosis):
-bathe my hands and the rest of me in a oil based bath emollient used for eczema and the like...bliss for dry tight skin!
-using some of it neat to gently massage in and around the nail bed and also my toes too, prevention is better than the cure! I do this every night without fail!
-battery heated gloves to keep my hands at a constant temperature, a must in very cold weather.
-moisturise all the time even when you're sat watching TV. Also put cotton gloves on to sleep in so the warmth lets the cream sink in.
I haven't had a bad time with my hands for almost 9 months. Give it a try and it may help to consult with your doctor.
I've had to except scleroderma is a 24/7 job, it takes a lot of hard, regular work to try and keep an unstable disease stable
I hope sincerely you get some comfort soon. Let us know how you get on and always take comfort that your sclero family are here to try and help you and listen.
hugs Lynn x
Posted 26 September 2010 - 02:53 PM
I had a toenail, an index finger and my ring finger do what yours is doing-oweee, huh? I don't recall any bleeding except on the ring finger. The dermatologist I saw said it was psoriasis, as did the one I went to for a second opinion. I have no clue what it was, the ring finger is healing nicely-that was the worst. The other two are still bothersome.
I didn't do anything other than moisturize them when I remembered to and I'm not on prednisone-in fact, no one gave me anything for them. It did take a long, long time for the ring finger to start to look almost normal again and it no longer hurts. The other two do even though they still have their nails attached.
I'm new here and have Raynaud's but I haven't been diagnosed with scleroderma--yet. I have an appt. in 10 days to find out. Two of the specialists I see seem to think I have it as I have a lot of internal stuff going on. My sister has it and agrees with them. Time will tell.
I hope you feel better soon.