Well, here goes. Own personal input from an old 'un of 30+ experience of daily steroids, firstly in massive doses and then over the years upping and downing depending on how my old bod was coping.
I honestly do not think that on a dosage of 4mg per day that you need have any worries whatsoever. Just a bit of information I know you know, but just to put you in the picture again.
Common side effects - Increased appetite, indigestion, nervousness, insomnia, greater susceptibility to infections, increased blood pressure, slowed wound healing, weight gain, easy bruising, fluid retention.
These don't affect everyone though Glojer, so do not worry. Some people might have one or two or in fact all of the symptoms, but others don't.
Rare side effects - Change in skin color, dizziness, headache, increased sweating, unusual growth of body or facial hair, increased blood sugar, peptic ulcers, adrenal insufficiency, muscle weakness, cataracts, glaucoma, osteoporosis.
I noted that you mentioned the last three on this list as being of concern. As with everything else, you do have to be careful of putting these type of things down to a certain medication. If you notice anything odd happening to your body, then report it to the doctor. Again though, these are rare side effects, and therefore are not considered to be the "norm".
Serious side effects - Vision problems, frequent urination, increased thirst, rectal bleeding, blistering skin, confusion, hallucinations, paranoia, euphoria, depression, mood swings, redness and swelling at injection site. Call your doctor immediately.
Again, I feel that things on this list are not always caused because of steroid use. I honestly know of people who have some of these symptoms that are listed, and have never taken even 1 mg of steroid in their lives.
Dosage - For severe inflammation or to suppress the immune system: 5 to 100 mg a day in divided doses.
As you can see from this Glojer, the "norm" for the majority of people is 5 mg, either as a inflammation dampner - what a way with words I have - or as a maintenance dose. The way you personally have taken the steroids in the past has not been, in my opinion, of sufficient dosage or for prolonged periods of treatment to cause you to worry about the side effects. The "common" side effects again do not even mean that you will go through these. Any of the "rare" or "serious" side effects would be reported instantly I would think to the doctor, and the appropriate treatment and care given. There are things you can do to minimse the side effects too:-
Keep to a low-sodium, low-fat, & low-carbohydrate diet & limit your calorie intake. Diuretics can sometimes be prescribed to deal with bloating & fluid retention. You should increase your intake of calcium & vitamin D, taking a supplement if necessary. Keep active to minimise the risk of osteoporosis & muscle wasting. If possible, stay away from relatives & friends who have colds or other infections.
Now to the main point of all of this. I honestly feel that you should go back on the steroids. The joint pain and tiredness you are experiencing is sufficient in my mind for you to go ahead. You have so much going on at the moment, and you need to have reserves of energy come from another source. This is what the steroids will enable you to draw on. You know yourself that before when you have taken them, your joint pain is improved greatly, so when that happens the stress on your limbs is taken away, therefore the work needed to get you living a relatively comfortable and pain free life is minimised, therefore less tiredness. All in all, better general wellbeing and vitality.
Glojer my friend, I honestly would go back on them. Think about it, perhaps you will stay on them for as long as your present situation lasts, and when braveman is better, then you can start again to reduce them. In that way, you always know that when you need that energy boost and joint pain relief, you can go back on the steroids without worrying.
Stick to your guns too on the anti d's issue. You know you best of all.
Take care my friend. Love to you and your darling husband.
I am not a medical doctor, I only speak from my own experience of the illnesses I discuss here.
Last edited by goldenwings; 12-16-2005 at 02:55 PM.
Golden my friend thank you from the bottom of my heart. I knew you would have such wonderful information on this subject and I value your opinion very much. Going over the pro's and con's I am beginning to think you are right. I seem to have more side effects with these other meds than I do prednisone, and I have tried two or three different meds. I do need to function at a more comfortable level especially right now.
The inherited worrier side of me still makes me cautious about what can happen and I think because of the stress and the pain and fatigue at this point I can't think as clear as I should. So I will make my logical side think harder on this and write down the pro's and con's and make a decision and be done with it. For tonight I will rest and put it out of my mind until tomorrow.
The one thing I will not falter on is the anti D's, yes I know my body and I don't need more help with sleep. Actually I think I slept better when taking the prednisone probably because I had less pain.
Thank you again Golden I will let you know my decision.
Patience seems like you have Christmas all figured out, good for you. Being with friends and family is what it is all about. I have the opposite with my hubby, the closer Christmas gets the more he usually wants to buy. I always have to keep reminding him our shopping is finished. Of course this year he is taking a sabbatical on the Christmas doings, all except for Christmas day and our grandson.
Golden just wanted to let you know I have made a decision and I am going to go back on the prednisone. The pro's far outweighed the con's right now. I took into consideration what my gp said and I have a friend who has two elderly relatives who have had serious side effects from long term use of prednisone so I listened to her arguments.
Bottom line is it works for me where other things have not and at this point in time I need to be able to function to take care of me and hubby and everything else. I actually lose weight on prednisone, probably because I have more energy to exercise and do things, I go to the eye docs twice a year for check ups, I get bone density tests done regularly. I also have not had any side effects from the prednisone yet and with the other drugs especially this last one there has always been some sort of uncomfortable side effect.
So my goldenwing friend thank you so much for the help, just making the decision has relieved some stress. I started this journey to find a new rhuemy before braveman started the chemo and was determined to go through with it. When the new rhuemy turned out to be not so great I really needed the help of someone who has been there, and you were there for me. Thank you again.
For now I will take the prednisone, continue with the old rhuemy and wait for my opportunity to fight another day. Bigs soft hugs to you and compassionman.
I am glad you were able to come to a decision. I know it hasn't been easy but you and only you know how you feel physically and mentally and your body is taking rather a bashing at the moment. With all that is happening the effect on your body is harsh. The thing is though, it is your body and you control what happens to it as far as medications go. As you have said before though, when you feel better then it will be time perhaps to taper them dowen again, but you will certainly feel the benefit now I hope. I do so believe that this is what you need and I send my love and millions of gentle ((((hugs)))) to you and braveman.
Just got home from shopping about 9.45 pm. It is so, so cold here, between 1 and 3, so we are still not quite warm, doesn't it just go through to the old bones? Compassionman is going to have a rest after he has prepared everything for work tomorrow. I am just going to sit and watch TV and have a huge cuppa hee hee !! Oh, and some fudge covered with sliced almonds yummy yummy !! I need the extra fat on the old bod to keep me warm - who am I trying to kid, I am just a slave to handmade fudge hee hee !!
Take care my friend and I will speak to you soon.
I am not a medical doctor, I only speak from my own experience of the illnesses I discuss here.
Last edited by goldenwings; 12-17-2005 at 02:46 PM.
Handmade fudge, oh how I love that and with nuts of any kind. Been doing the prednisone for 2days now and already feel some better. Shopping huh, how nice. I have finished all but a very few things for Christmas and will try to clean those up this week. I took a load of wrapped gifts to our sons house already since he and his wife are doing Christmas this year.
Thanks again golden for the wisdom of your years of experience. I will chat with you again on the fibro board.
hi to all .. i have been dxd with ms a few years ago and recently with fibromyalgia..
i have been reading about the aching joints you all have ..i have had these since i was a youngster mainly in the knees recently i have had the joint aches through out all of my joints ....now i'm not sure if its the ms or fibro or possibly lupus ..my son also has fibro and is now being seen by a neuro for ms .........can anybody help
Dear Mousemau, Joint pain is common in lupus but also in other diseases & conditions. In lupus, I've read, it tends to be symmetrical, meaning two-sided (e.g., both knees, both ankes, both wrists, etc.).
Have you ever seen a rheumatologist? They use standard criteria, of which you generally must have "4" of the "11" listed, at sometime in your life, to be Dx'ed with *systemic* lupus (SLE). (There are milder forms of lupus, called "subsets", in which you could have fewer than "4", though.)
You can read up a bit on these diagnostic criteria, various types of lupus, tests, etc. right from the Board here:
(1) The "sticky posts" at the beginning of the thread list
(2) The "Resources" tab above will get you into general medical sites, after which you can look for lupus; plus there's also a search box above, too
(3) Hardcovers in bookstores & libraries by several authours are particularly good. One author is Dr. Daniel Wallace, and the other is Dr. Robert Lahita.
I've also read that in early stages, mild lupus & mild MS can look enough alike to be hard to differentiate. Lupus patients who also have antiphospholipid (sticky blood) syndrome can have additional neuro problems; and people with "CNS lupus" can have very serous problems indeed.
I had neuro-like problems in the years I was seeking answers but these were mild (tingling, slight numbness, huge headaches). But I also had photosensitivity, recurrent nonscarring torso rashes, anemia, swollen joints, etc.---stuff when put together paints a picture of lupus with some systemic impact but without major organ involvement (e.g., kidneys, CNS, heart, lungs).
Hope this helps frame your thoughts a bit before you read &/or post more questions. All best wishes, Vee
VeeJ is correct as usual. Joint pains come with such a variety of ailments as to prohibit listing them all. I'm not even certain I know them all. Like Lupus, most forms of arthritis also cause symetrical pain and damage. Thyroid disfunction, be it too much or too little, can also cause joint pain as can sleep apnea. In the case of apnea it is from low SA02 levels during the night when the apnea causes you to stop breathing. Sudden weight gain or loss from illness or medication can cause joint pains also. If you has rheumatic fever as a child you can develope joint pains as an adult even if you never had them before. I'm sure by now you see what we mean by a long list of things that can cause this.
This is why we need to continue to push our physicians to narrow the field and find the exact problems instead of simply guessing or saying it age related or exercise related. I hope you feel better soon and best of luck getting to the cause of the pains.
Veej and patience50....such great info. Thanks for the reminder of the many things that can cause or contribute to joint pain. And thanks for reminding me that I need to keep pushing to find out what is causing my pains and symptoms. I will keep that on my agenda and keep pushing it closer to the top as things come to a close with my husbands illness.
I don't always take the time to post, but I always gain something from reading your posts.