I have noticed that over the last couple of days the area at the base of the back of my neck is inflaming and becoming quite sore at different stages of the day. It sort of goes across the back of the shoulders and looks like I have doing a lot of shoulder presses as it swells too. I am a little concerned and mentioned it to the Doc who said that is was more than likely the effects of the prednisone and the fact that the medication deposits fat in certain areas of the body.I am a little concerned but can deal with it for now. I am just wondering if anyone else has had this symptom or reaction to the drugs?

I have been on Prednisone for almost 22 years at various doses. Currently 9 mg per day. Highest dose was 100 mg a day. I have the extra fat pad everywhere. I do have the one in the back of my shoulders. Some call it a buffalo hump. It varies in size depending on the dosage of prednisone. I was initially treated as Lupus with pulmonary involvement. I was re-diagnosed in 2009 with ASS. Have a great day.

Thanks Barbbe. Is the shoulder/back pad tender at times or does it settle down? The early morning knee joint pain is starting again, may have to pop out to the chemist today I think.

See if you can document it's progression with photos to show your doctor. Though prednisone can cause puffy cheeks and fat deposits in various places(such fun side effects), it is usually more gradual and doesn't have the inflamed feeling you mentioned. Sorry you're experiencing yet another wacky unexplained malady with this AS!

it pretty much is just part of my adventure. It annoys me because it stops me from wearing certain types of clothes like jackets. It does shrink some when I am on low doses of prednisone for a long time but resurfaces when I need the high doses..

Just wondering if anyone has brought up any blood through this disease. Noticed light coloured blood when I spit of a morning coming up and I noticed it before bed last night. Thinking it may be an infection I had or am still having- any thoughts or has anyone had this?

Lildreamer, I can't say I've ever brought up any blood throughout my time living with this. It may wise to see your GP, maybe you've developed a secondary infection through being immunosuppressed. Are you taking an antibiotic as a prophylaxis?

Lildreamer, I would be seeing a doc or specialist ASAP. If I get a productive cough that is the first question I am asked - Are you coughing anything up and what colour is it? Blood would be something you need to deal with immediately. Lisa

No I am not coughing it up as such. I just noticed it in the shower the other morning when I felt like I had to spit. I am assuming that I must have had some type of infection and this is the aftermath. I spoke to the pharmacist who said that while on the bactrim antibiotics will not make any real difference. Might see a GP tomorrow.

Could it be from your gums and having a dry mouth at night? Only asking as these drugs play havoc with our teeth and gums

Thought that too as I have had ulcers recently but I have not noticed that they bleed or had the taste of blood in my mouth. Either way seeing the GP today. Really need to find out about this ongoing throat inflammation which has been there since day 1 and is constantly active but not painful. Every time I bring that issue up it sort of gets ignored. Think I will print some stuff out form this forum regarding this complaint and see what GP recommends. Anyway enough of my whinging and wining, how has everyone else been? Really interested in how those on the cellcept are going as I still think this is the drug of choice for me that has yet to tried.

lildreamer, I've been on Cellcept for over 4 years. Before I started it I had a tight feeling in my upper chest when I would breath. That went away during the first month I was on Cellcept. I still get short of breath doing things, walking, carrying groceries or laundry, that type of stuff. But my lung functions have improved quite a bit during this time. In the beginning when I would take the 6 min. walk for my PFT, my saturation levels would go from 90 to 60 in the first minute. It only takes me about 3 minutes to get back to normal after the walk. My saturation levels on my last test went from 90 to 78 by the end of the walk, and recovery was less than the 3 minutes. I like Cellcept, but I'm not fond of the monthly bloodwork I have to have done. Frankly, I'd rather be able to breath, so I go as cheerfully as possible to the blood work. I just did that task today. Will find out my results either tomorrow or Thursday. Best of luck, Terry

I too am on cellcept and recently had my 2 month checkup. My lung function has improved from 51 to 59% and my diffusion rate has improved 3% so slowly, I am getting better. I have not noticed any negative side effects. Hope it works out well for you!

lildreamer I did quite a bit of research on cellcept and it looks like it has amazing potential. I've given our specialist the research on it and he's going to pitch it to the hospital board so fingers crossed. IVIG is the other thing that looked really good I thought. I hear you on the throat problem too! Not that I have ASS of course or now remotely what that feels like. But, I have had this odd throat sensation that comes and goes and sometimes it feels like there is a golf ball in my throat and other times it feel like swallowing is different or my throat is tightening. It came after I was diagnosed with Coeliac but still pops up at times. It is so annoying and can bothers me a lot because it's such an intense sensory thing.

lildreamer before my husband was diagnosed officially and was having a gazillion blood tests, one thing that did pop up a few times was that his liver function was slightly abnormal. Apparently that can also be a side effect of some medications, including the Cyclophophamide he is currently taking and that's one of the reasons he's having fortnightly blood tests at the moment.

Yes my LFT is now usually higher but recently my specialist said it is also because I have put on weight.

All the drugs we take, prednisone, cellcept, dapsone, and all the rest, they all affect our livers. I go every 4 weeks for blood tests. I was diagnosed in January of 2007 and have also take Cytoxin (this is an oral chemo drug). While on that, I had to have the blood work done every 2 weeks. And don't let your doctor give you crap about weight gain. That's the prednisone that they put us all on. I was overweight already when they put me on prednisone and my doctor told me that I would gain weight while taking it. I just laughed and said "Well there's something I need to do." I took it upon myself to watch carefully what I was eating during that time, and actually managed to lose about 20 pounds. My lung doctor said he would love to show that result to his other patients who were taking prednisone to show them that it could be done. I just think that I reacted differently to it, as well as watching my portion sizes and junk food intake. In the long run, we can take the meds and hope the side effects aren't too bad, or not take them, and watch our quality of life go right down the drain. I'm not ready to give up. As a matter of fact, with my arthritis being what it is, I am looking forward to a knee replacement in the next year. I just hope my muscles can handle the physical therapy afterwards. I pray for us all every day. Keep up the good work and do what you need to do to maintain what you have, and hopefully improve some of it. I was diagnosed early on by somebody who knew what it was as soon as she looked at my hands. I love my rheumotologist. She is the best thing that has happened to me since this all started.

Off to see the throat specialist on Monday to see what this blood that I am spitting out is all about. Hoping that this is nothing too serious and just another one that will stick around for a week then move on.

Good luck LilDreamer I am keeping my fingers crossed. Lisa

Praying for you Lil Dreamer. Hoping all goes well on Monday. Praying for all of us and that a cure is found soon.

Hi Everyone, Has anyone had abdominal pain/gastrointestinal pain as a side effect to cellcept. As all was going seemingly well, this developed this week. My doctor is amazing and has switched me to azathioprine. Lildreamer -- I noticed you inquired if anyone had liver complications. For this medication, it says to be sure to monitor the liver function. Have you experienced liver complications thus far? Go back to the doctor in 2 weeks so hope that this change will be a positive one. Hope everyone is doing well! Mary

My liver was the first thing noticed before diagnosis and has been ongoing throughout. I am just wondering if it is because of all the meds including antiinflammatory I was taking before diagnosis that causing the high ALT reading or is my liver doomed? This is somewhat concerning at the moment as I have some scans coming up soon and am quite afraid of the outcome. Been also feeling a bit wobbly lately.

Lildreamer when my husband is discharged from hospital they post out a discharge summary about a week later and it has an overview of why he was there etc. but it also has all test results attached like total blood counts etc. I was taking a look through them the other day to find his potassium levels and noticed that there have been quite a few things out of whack along the way. Obviously not to a degree that they have been overly concerned about as they have only mentioned a few of them in passing. But I thought it might just be interesting to note.

Hi All. Noticed there have been a few posts since last time I was on. Am not getting my email notification of new posts lately...have to check into it. Anyways........ Liver function and tests are directly related to the medications we are taking. ALL the medications, including aspirin, OTC anti-inflamitories, immunosuppressant drugs, etc are processed through the liver, and can cause harm to it if not monitored. I also do blood work every 4 weeks without fail. I monitor my ferritin, GGT, Albumin, Bilirubin, as well as many others. They can be a good indicator of damage occuring to the liver. They are all out of whack, but remaining constant at this point. Many of them can also affect other things. Methotrexate will affect folic acid levels, so often we need to take a folic acid supplement to negate the effects of the methotrexate. Prednisone can affect vitamin D absorption, so extra vitamin D may be called for.... It can be a vicious cycle, as all of these end up processing through the liver. Monitor what goes on with your body, and watch for the changes. minor ups and downs are normal, for everyone, but watch for major trends or changes. God Bless and Keep Up the Good Fight Wayne

Thanks Wayne, good to see you back. How have you been?

I am doing ok, considering. Getting ready for a long awaited trip to visit my wife's family in Italy. Was supposed to go in 2011 at about the same time as i really got sick, and got my diagnosis. Finally cleared to go. Looking forward to it, but kinda nervous too. My meds, along with the IVIG do not seem to be holding me very well anymore. When i get back, my Doc is gonna do some more testing. He is considering moving me to cyclophosphamide, and doing PlasmapheresisWe are also gonna try to lower my prednisone again. He feels it could now be affecting the muscles in a bad way. I have talked to him about the HSCT treatment offered in Russia. Well, he has considered it, but due to the dangers involved, we want to try some other things first. We can actually do it right here where I live. Very good artical about it http://themscure.blogspot.ca/2011/06/getting-into-hsct-treatment-if-you-have.html It is available in the US as well as a few other places. everything else is going well. God Bless and Keep Up the Good Fight. Wayne

You say that the IVIG and meds are not holding up. In what way Wayne? What symptoms are returning or increasing? I feel that the cycloshoshamide is not so effective either and believe it is the prednisone keeping my CK level down but symptoms still exist. How much prednisone you on at the moment?

Hi Lildreamer. My lungs are doing well, but my muscles are not so good. They get worn out super fast right now. I tried to help my wife change the bedding in the spare room...almost did me in....wiped me out completely. I also get very tired just doing a short grocery trip.... There is 3 possibilities for why this seems to be happening right now. we are testing to find out why my phosphate levels will not stay up right now. Low phosphates can cause muscle weakness and fatigue..(yeh, lucky me...haha) The IVIG may no longer be working as well as it did, causing a decline in my function... Or my long term use of Prednisone is starting to cause damage to the muscles rather then helping.. We are gonna do testing when I get back from my trip to determine which one or combination is causing the current problems. We will figure out (hopefully) what is doing it, and how to fix it. It is time to start getting more aggressive with it all. I have not been able to get below 20 mg/day prednisone, but for most of the last 2 1/2 yrs I was taking between 50-80 mg/day and as high as 1000 mg/day. I will keep you all posted on how I am doing, as well as how my energy does while on my trip. God Bless and Keep Up The Good Fight Wayne

We hope you have a great trip Wayne.

Cheers mate. My specialist has put me on a two week plan to reduce the prednisone to 40mg per day from 75mg initially, I am hoping that this won't happen to me and my levels remain the same. Will keep you posted.