Hi McCourtjs. I am glad you are feeling better and back on your Pred for a while. I think you will settle down now and be able to make plans and do take that sabbatical, it will give you time to stand and stare a bit and raise your spirits. There are many ways of tapering Pred, for me it worked on a very slow taper at 1mg a month once reaching 10mgs. I did ask my Rheumatologist once if I could do it faster and he was very negative about it. He is the top Rheumatologist here in London and has brought me here safely. You have to do what works for you but please do it slowly, some of us have to almost sneak this stuff out of our systems, some do it at 0.5mgs a month. It is good to know you feel better. All of us have 'blips' along the way. It doesent mean you are not making progress. My best wishes to you. Stay in touch. Autumm

McCourtjs, sorry i was off line for a few days... I just got your message, but could not find the thread...

Adrenal Crisis is the thing we worry about. We are steroid dependant for up to a year after getting off of steroids. If we encounter a big stress like an infection it can cause us to need more cortisone than our adrenal gland can produce, and that can lead to crisis. Usually a stomach nausea is one big sign. Tapering too fast can do the same thing. I wear a med alert bracelet noting i am steroid dependent. The only treatment is a dose and a half of your normal dose, and then a slower taper.

Sorry i was not here to help.
Shawna

Hi Mccourtjs. Adrenal insufficiency is something that all of us must watch for at 5mg and below on prednisone. Even when getting completely off the steroid, the adrenals must be watched especially when feeling sick.

Gatoraid is a terrific drink to feel better when tapering or to help with the adrenals. Gatoraid has a nice balance of sodium, sugar, and electrolytes to hydrate and help the kidneys. Watch the blood pressure.

I am so glad that you are feeling much better. I understand about the feeling depressed. I found that when my meds are correctly adjusted both the prednisone and sparring drug, then this does help my total sense of well-being. Adrenal problems can make the entire body feel lousy including the emotions.

Think positively and move forward. Good Luck!

Hi McCourtjs . I meant to add that if your Sed rate is still high you need the prednisolone to. Ring that down as it tells you still have inflammation. Wondering why your Rheumatologist not seeing you until March if your Sed rate is still high. Hopefully the Pred and the MTX will kick in and do their job and you will feel better soon. Autumm

Autumn, why do you think 2 months is too long? I also didn't like that it was so long. He said that he wanted to give the methotrexate time to work now that I am at full dose. He also gave me his email so that I can communicate with him along the way and not save my concerns until my appointment which I had been doing in the past. He said that he feels like he is always chasing the disease with me which is why he gave me his email. Yesterday was a great day but I woke up today to feel awful and with diarrhea. Not sure if that is due to my shot late Monday. I always welcome your insight.

Hi McCourtjs. Two months is not too long now you have explained that you are in touch with him by email etc. my Rheumatologist saw me every two weeks until my labs settled. Its so important to be connected quickly until you settle down with Sed rate, Meds etc. I am sorry you have diarrhoea. I take Imuran so can't advise on how you should be on MTX. Lexis here knows so much about MTX. Hopefully she will come on and advise. I know she switched to taking it by injection. Do you take Folic acid with the MTX, very important that you are doing so. Are you taking something like Omerprazole to protect your stomach from the Meds and are you taking Alendronic Acid to protect your bones and joints from the Pred. How are your Vit D levels, most of us are short of it and take huge doses with calcium. You will be fine but you need to get the Meds sorted to settle down. What kind of auto antibodies do you have. It really helps knowing. Autumm

I can share my tricks with the MTX. A normal dose is usually 25 mg. I could handle the pills to 17 mg but then had to move to the injection to get to 25 mg. I try to have a good dinner (no skimping) the night I am doing my injection. I do my shot before I got to bed so I sleep through many of the side effects. I found having a plate of hashbrowns really helps my tummy the next day. When I talked to my doctor about it, he said it probably is good to have something good and solid in your tummy. I don't always have hashbrowns now but try to have 2 pieces of toast or something similar. If I have a salad for dinner, that isn't enough. Neither is fruit.

I had reflux before I got Myositis. When I started MTX, it started to be a problem. I found Nexium (name brand) worked the best to control that and keep my tummy settled. I also take 5 mg of Folic Acid the next day after my injection.

The day after my injection, I sometimes wake with a headache. Sometimes I am a little nauseated (depends what I eat the day before). I also find I do better if I avoid meat until at least the evening. It often tastes terrible and smells rotten to me...even when I know it is fresh. Meat in a sauce seems better but not always. I usually have "urgent poop". Not necessarily diarrhea but I need to go and go NOW. It is not unusual for me to poop 2-3 times that day. Sorry TMI. I also have fatigue...like I couldn't go shopping that day or do activities that require strong attention but each week is different. Sometimes, I sleep almost the entire next day.

I've learned to save all my TV shows from the week on my DVR. I sleep in as long as my body wants (often 11 or noon) and then rest on the couch. I eat things that don't smell terrible and wait for the day to pass. It is a great day to do lists and more sedentary tasks. I find I can drive somewhere but not really walk much.

For me, once I got the 25mg, I was able to control my CPK fine. It helped me get off Prednisone.

Let me know if I can answer anything else.

Good morning ladies. I do take folic acid 1mg daily, prilosic for my stomach, and alendronate for my bones. The diarrhea is urgent and repetitive. I currently take my shot of meth on Monday but want to move that back to Friday night so that I will be sick on the weekend in case I go back to work which I don't think I will be doing. Tomorrow will be decision day. I feel much better today than yesterday. I will also keep in mind taking the increased amount of ( 5 mg ) folic acid the day after my shot. I will have to ask my doctor about the type of auto antibodies that I have. Have any of you had unusually high amounts of iron in your blood? I do and he just sent blood work to see if I have a genetic marker for this. Not sure what it means. Food often tastes different to me than it should. Any comments? Thanks for all og the good advice and please keep it coming.

Hi McCourtjs. Sorry I don't know anything about excess iron in the blood. I believe the Folic acid should be taken in larger than 1mg amounts and not on the same day as the MTX but feel sure Lexis will Advise when she reads your post. Have you considered taking the MTX by injection. I have read here in the past that the fatigue and other symptoms settle down as your body gets used to the drug. Don't get too down, you will get there. We are here for you. Best wishes. Autumm

Hi Mccourtjs. Our meds will cause a metallic taste in the mouth, especially MTX. The metallic taste can be annoying. Coffee will taste terrible with this side effect.

Drugs.com is a good place to look up side effects. I hope this helps.

I see you are taking the shot. What is your dose? My doctor always kept me on 5 mg the day after my Metho dose. Not sure why. I hear others take it daily. I asked and my Neuro said once a week was fine.

The metallic taste has changed my eating significantly. Many things I used to love, I don't like anymore. One thing I can't get enough of is sour stuff. I now love to eat lemons....just peeled. So weird.

Many people find help with the metallic taste by not eating with metal utensils. Try plastic instead. Also, many people suck on hard candy to help with the taste. I find I do best with simple foods from the source. I don't like the taste of processed foods. I really like fresh fruit and veggies. Not so much meat anymore although I still eat it. I find using things to combine with meat helps. So like spaghetti, or casseroles, lots of sauces to mask the meat taste. I also like fresh shrimp. Maybe consider keeping a food diary of what is good and what is not so good to you. That can maybe help. Don't be afraid to change your menus to match what works.

For me, I find the Metho day, I don't do well with much so I just eat to nourish myself. It gets better the further out I go from that date

I move my shot around. I was told to move it one day a week. So if you take it Monday, the next week do Sunday. The next week Saturday. The next week Friday. So it will take you 3 weeks to get to a Friday schedule. I take mine on Saturday night so I have my Saturday as usually my best day. Then Sunday is on the couch. Monday I am ready to go to work.

I am taking 1 ml or 25 mg of MTX by injection weekly. I just started the full dose on Monday. Food definitely tastes different to me especially anything made with tomato sauce. I have to ask my husband to taste meals when I am cooking because although I made them the same way that I always did, they would taste wrong to me. Have any of you completely eliminated rashes. My forehead has been bright red for a year now. I will know that I am getting better when that goes away.

I have PM so no rashes. Hopefully yours will clear soon.

I would suspect your side effects will reduce after your body gets used to the dose. Things are much better for me now than it was when I first got to 25 mg.

Hi Mccourtjs. I too have PM so thankfully no rashes. You are on a very low dose of Prednisone for someone with still many symptoms. The drugs unfortunately do not work quickly like taking Asprin for a headache. It took eight months before my Meds kicked in and I felt I was turning a corner and a year before I felt better. This disease is a marathon rather than a sprint. Be patient and kind to yourself. You will get there. Best wishes. Autumm