I'm now taking Enbrel and I was taking Remicade. On both, I continually catch every bug. I was sick for 2 enitre weeks in October - separate weeks. And I'm sick again and have been in bed since Friday morning. I slept about 20 hours Friday, can barely speak with a sore throat, ears hurt and ache all over. It seems I'm sick 25-30% of the time and it hits me hard and long. I'm extremely weak, only leaving my bed to get water and food if I'm hungry.
I don't know how I'll get through the holidays. I don't have any decorations up and haven't bought any presents. And I can't plan anything because I don't know if I'll get sick again.
Awh. That is awful. Last year I felt so sick from PsA I didn’t put up a tree and my mom acted like I was the worst mom in the world. I just couldn’t do it. I was like you, fatigued and sick and hurting. I am on Humira now and I can do so much more! I hate it is giving you a bad time. I had to try a few different drugs before I found te combination that worked for me. Can you talk to your doc and see if you can do anything to help? Or maybe he will go ages. And switch you. Make sure you are eating really healthy, I know that is so hard when you don’t feel like shopping, but my diet helped me more than just about anyhing- especiallllllly cutting out artificial sweeteners (except Stevia- goodby Diet Coke sob sob). I felt a tremendous improvement in my overall well- being after that minor change, and I am a huge skeptic. Keep me posted on how you are doing. I hope you feel better. Do let your dr know that you aren’t feeling well. Help might be as close as a phone call.
Can you shop online? Amazon prime has a free two week trial and everything you buy can be shipped to you or the people you bought if for for something like $2!? Just a thought Then you can cancel before the end of the trial period. Plus you get to read free books on your kindle or iPad and watch free shows. That will keep you entertained. It isn’t a complete problem solver but you cans shop from home and save tons on shipping!! Happier and more pain free holidays
Can you shop online? Amazon prime has a free two week trial and everything you buy can be shipped to you or the people you bought if for for something like $2!? Just a thought :-) Then you can cancel before the end of the trial period. Plus you get to read free books on your kindle or iPad and watch free shows. That will keep you entertained. It isn't a complete problem solver but you cans shop from home and save tons on shipping!! Happier and more pain free holidays :-)
I do make an effort to eat healthy but haven't cut out diet pepsi yet - I will do that.
TigerGirl said:
Awh. That is awful. Last year I felt so sick from PsA I didn't put up a tree and my mom acted like I was the worst mom in the world. I just couldn't do it. I was like you, fatigued and sick and hurting. I am on Humira now and I can do so much more! I hate it is giving you a bad time. I had to try a few different drugs before I found te combination that worked for me. Can you talk to your doc and see if you can do anything to help? Or maybe he will go ages. And switch you. Make sure you are eating really healthy, I know that is so hard when you don't feel like shopping, but my diet helped me more than just about anyhing- especiallllllly cutting out artificial sweeteners (except Stevia- goodby Diet Coke sob sob). I felt a tremendous improvement in my overall well- being after that minor change, and I am a huge skeptic. Keep me posted on how you are doing. I hope you feel better. Do let your dr know that you aren't feeling well. Help might be as close as a phone call.
Thanks for your reply Sybil. And I do like your suggestion about just focusing on getting well and not worrying about all the Christmas stuff - I was thinking that myself this morning and seeing you put it in writing makes me feel like I'm not crazy for thinking of chucking it all - but still enjoy the holidays ( with minimal effort). Thanks ! Great advice !
I doubt I know more about the biologics than you do. I do know that I need to talk to my rheumy about getting sick so often - I've been getting sick often this past year since I started taking biolgics. Before biologics I rarely was sick.
I'm getting sick so often it's affecting my qualify of life. My main issue with my PsA is inflammed tendons. I've had no swollen joints, so I'm going to ask my rheumy if it's safe to switch to a non-biologic med that will help my inflammation. I've been in bed for 5 days and I'm still very sick. And I'm already concerned about how long it will be until I get sick again.
sybil said:
I had a look at your page and realised that you probably know more about this disease and the meds than I do, so I'm not going to make any comments about your battle with Biologics. Except that I'm wondering what your rheumy has to say ..... does he / she think that your susceptibility to bugs will pass?
You are going through such a tough time at the moment & the time of year doesn't help - most of us feel the pressure to get festive whether we feel like it or not, I'm sure. But really, why should you go through the motions when you are struggling like this? I don't know your situation so forgive me if I'm out of line, but couldn't you just defy the whole christmas milarkey and concentrate on getting your strength back?
But mainly I just wanted to say that I've read your post a few times and have been thinking about you and hoping that this very difficult period passes soon. And that Enbrel (or another biologic) comes up with the goods and turns things around.
Hi Tiger Girl, how have you changed you diet that has helped stay healthy? I make a whey protein shake with kale and fruit every morning and try to eat fruit and vegetables during the day. I also take the following supplements: multi-vitamin, aronia, krill oil, Vitamin B complex, calcium and biotin.
How did you notice that eliminating diet coke helped?
(I'm still home sick but feeling better. I slept 14 hours today ! I expect it will be a few more days until I'm 100% which will put me at 9 days being sick. I need to figure out how to avoid getting sick.)
TigerGirl said:
Awh. That is awful. Last year I felt so sick from PsA I didn't put up a tree and my mom acted like I was the worst mom in the world. I just couldn't do it. I was like you, fatigued and sick and hurting. I am on Humira now and I can do so much more! I hate it is giving you a bad time. I had to try a few different drugs before I found te combination that worked for me. Can you talk to your doc and see if you can do anything to help? Or maybe he will go ages. And switch you. Make sure you are eating really healthy, I know that is so hard when you don't feel like shopping, but my diet helped me more than just about anyhing- especiallllllly cutting out artificial sweeteners (except Stevia- goodby Diet Coke sob sob). I felt a tremendous improvement in my overall well- being after that minor change, and I am a huge skeptic. Keep me posted on how you are doing. I hope you feel better. Do let your dr know that you aren't feeling well. Help might be as close as a phone call.
You are way better than me! I don’t take many supplements, just a multi vitamin and vitamin d and calcium. I used to take folic acid but since I stopped mtx I stopped. I don’t do a healthy shake but I would be interested in the recipe!! I did an elimination diet for six weeks because I have verrrrry bad migraines. They are so bad I had to have surgery this past summer from an umbilical hernia created from throwing up so much from a migraine. Blach!! This past week I had one and the neurologist had to give me six shots to get me to stop vomiting. They are no fun I carry a pen like an epi-pen to stop them but it doesn’t always work. Anyways the point is I cut out sugar, dairy and gluten and artificial sweeteners. I gradually added things back. I could tolerate the dairy and the sugar. Gluten and sweeteners are big no nos. also red wine. I eat tons of fruit and try to eat lots of veggies. It made a huge difference in my migraines and also in my stomach. Some studies suggest that autoimmune diseases are related to leaky gut where your tummy leaks out and causes an over active immune system (simplified). My dr didn’t discourage my diet, he encourages all types of avenues of healing, but he also encouraged me to eat lots of salmon and cold water fish. He said pills couldn’t compare to actually eating the fish and the omega 3’s were hugely beneficial to arthritis patients. He also said to use the diet in conjunction with my meds and not in place of. Sometimes I’m a very good girl on the diet and sometimes I’m not. I wish I had a personal shopper. Then I would always be a good girl!! Loading and unloading groceries is hard and my husband never wants to go after work. I don’t blame him. But still… It hurts my fingers and elbows! I LOVE Whole Food but he calls it Whole Paycheck they have so many gluten free foods! And tonight I made my own stevia syrups for my sodastream machine!!! Yay!!! So exciting. I got it from HSN for only $50 and ordered the concentrates online (Rio Cola concentrate) and followed a recipe to make the syrup. It is so good. It will make 15 liters. I am so happy because one thing I missed was soda.
When you are home sick is it a fever or fatigue or like a sinus infection? I used to have the worst fatigue I would sleep all day long and still feel like a zombie. I hurt all over and just basically felt like I had mono or something- swollen glands, sore neck, sore throat, little fever…they told me I had chronic mono and then chronic fatigue. I can sympathize with what you are going through.
I could tell the diet coke was working for me because of the migraines stopping and also just a general sense of feeling better. I had so many and then I had almost none. The difference was astounding. But diet coke is like crack… I can see how addicts feel! Seriously. It’s so bubbly and it settles your tummy when you feel bad and refreshing!!! Mmmmmm a girl needs one vice!?! Geez but it is not to be. Not worth it. So not worth it. But I drank one tonight lol!! Just one this week. Mostly I am so good. And I finally have the new stevia syrup which I have been wiring for.
When I was on mtx I carried hand sanitizer and washed my hands constantly because I was so paranoid ab catching colds and the flu. I also made my whole family get the flu shot haha! They didn’t mind because they wanted me to stay well. I have sweet daughters.
For my whey shake, I buy the whey vanilla protein powder from Trader Joe's but there are so many brands to choose from. I add one cup of unsweetened vanilla almond milk (has 50% more calcium) and a bunch of fresh kale in a mixer and blend until there are no kale particles, then I add frozen blueberries, strawberries or whatever I have and blend in crushed ice to make it like a shake. You can use spinach or whatever you want. I drink it at least 6 days a week. It's become a habit for me. I usually drink it in the car on the way to work in a cup with lid and hole for a straw so it doesn't spill. The whey protein powder also contains vitamins & minerals. I take krill oil pills because I read they're better than omega 3 supplements and aronia because it's suppose to be a great anti oxidant and anti-inflammatory. However, I continue to get sick often. So, I don't know if any diet can help me. But, I will continue to try to eat healthier - it can't hurt.
I'm at the end of day 6 of being sick and expect I'll be home for a few more days. I live alone and getting so sick so many times this past year has made me realize I need a plan for help when I get sick. I get so weak that I can't drive or do anything and need a plan to have help whether I call a nursing aide or have a friend who is willing to help in an emergency. I'm going to start reviewing nursing aide companies to be ready for the next time.
TigerGirl said:
You are way better than me! I don't take many supplements, just a multi vitamin and vitamin d and calcium. I used to take folic acid but since I stopped mtx I stopped. I don't do a healthy shake but I would be interested in the recipe!! I did an elimination diet for six weeks because I have verrrrry bad migraines. They are so bad I had to have surgery this past summer from an umbilical hernia created from throwing up so much from a migraine. Blach!! This past week I had one and the neurologist had to give me six shots to get me to stop vomiting. They are no fun :-( I carry a pen like an epi-pen to stop them but it doesn't always work. Anyways the point is I cut out sugar, dairy and gluten and artificial sweeteners. I gradually added things back. I could tolerate the dairy and the sugar. Gluten and sweeteners are big no nos. also red wine. I eat tons of fruit and try to eat lots of veggies. It made a huge difference in my migraines and also in my stomach. Some studies suggest that autoimmune diseases are related to leaky gut where your tummy leaks out and causes an over active immune system (simplified). My dr didn't discourage my diet, he encourages all types of avenues of healing, but he also encouraged me to eat lots of salmon and cold water fish. He said pills couldn't compare to actually eating the fish and the omega 3's were hugely beneficial to arthritis patients. He also said to use the diet in conjunction with my meds and not in place of. Sometimes I'm a very good girl on the diet and sometimes I'm not. I wish I had a personal shopper. Then I would always be a good girl!! Loading and unloading groceries is hard and my husband never wants to go after work. I don't blame him. But still... It hurts my fingers and elbows! I LOVE Whole Food but he calls it Whole Paycheck ;-) they have so many gluten free foods! And tonight I made my own stevia syrups for my sodastream machine!!!! Yay!!!! So exciting. I got it from HSN for only $50 and ordered the concentrates online (Rio Cola concentrate) and followed a recipe to make the syrup. It is so good. It will make 15 liters. I am so happy because one thing I missed was soda.
After a plane trip in October I had a stomach virus for a week then 5 days later was sick with flu like symptoms without fever for another week. Now, I feel like I have bronchitis and I do sleep a lot when I'm sick - 20 hours one day this past week and the past few days 14- 16 hours. And I become extremely weak, can't even drive or barely walk downstairs. Even when I'm not sick I have a problem with fatigue caused by the PsA.
TigerGirl said:
When you are home sick is it a fever or fatigue or like a sinus infection? I used to have the worst fatigue I would sleep all day long and still feel like a zombie. I hurt all over and just basically felt like I had mono or something- swollen glands, sore neck, sore throat, little fever...they told me I had chronic mono and then chronic fatigue. I can sympathize with what you are going through. I could tell the diet coke was working for me because of the migraines stopping and also just a general sense of feeling better. I had so many and then I had almost none. The difference was astounding. But diet coke is like crack.. I can see how addicts feel! Seriously. It's so bubbly and it settles your tummy when you feel bad and refreshing!!! Mmmmmm :-) a girl needs one vice!?! Geez but it is not to be. Not worth it. So not worth it. But I drank one tonight lol!! Just one this week. Mostly I am so good. And I finally have the new stevia syrup which I have been wiring for. When I was on mtx I carried hand sanitizer and washed my hands constantly because I was so paranoid ab catching colds and the flu. I also made my whole family get the flu shot haha! They didn't mind because they wanted me to stay well. I have sweet daughters.
Oh Frances, this sounds awful. Are there any benefits to the medicine you are taking? How can you hold down a job with that level of illness and fatigue? I live alone too. So if nothing gets done at home, nothing gets done. I used to have such a clean house!
I have high hopes for you that you and your Rhuemy can figure something out. From what I read on these boards, some people get infections less often and some get them more often when they take these medicines.
living the same dream, tried cosentyx constantly sick with infection till throat finally closed over couldnt breathe landed in ER so ill… gave it up due to infections and bowel issues… went off biolgoics from may last year until dec… tried cimzia… now my blood works got off results in bone marrow, platelets, creatine is way up, kidney stones, landed in er 2x with influenza a and bacterial pneumonia and my lkv cbc is so so high 17 in dec which is either from infection/cancer which weve never seen before…
biologics suck.
Then you can cancel before the end of the trial period. Plus you get to read free books on your kindle or iPad and watch free shows. That will keep you entertained. It isn’t a complete problem solver but you cans shop from home and save tons on shipping!! Happier and more pain free holidays 
I carry a pen like an epi-pen to stop them but it doesn’t always work. Anyways the point is I cut out sugar, dairy and gluten and artificial sweeteners. I gradually added things back. I could tolerate the dairy and the sugar. Gluten and sweeteners are big no nos. also red wine. I eat tons of fruit and try to eat lots of veggies. It made a huge difference in my migraines and also in my stomach. Some studies suggest that autoimmune diseases are related to leaky gut where your tummy leaks out and causes an over active immune system (simplified). My dr didn’t discourage my diet, he encourages all types of avenues of healing, but he also encouraged me to eat lots of salmon and cold water fish. He said pills couldn’t compare to actually eating the fish and the omega 3’s were hugely beneficial to arthritis patients. He also said to use the diet in conjunction with my meds and not in place of. Sometimes I’m a very good girl on the diet and sometimes I’m not. I wish I had a personal shopper. Then I would always be a good girl!! Loading and unloading groceries is hard and my husband never wants to go after work. I don’t blame him. But still… It hurts my fingers and elbows! I LOVE Whole Food but he calls it Whole Paycheck 
they have so many gluten free foods! And tonight I made my own stevia syrups for my sodastream machine!!! Yay!!! So exciting. I got it from HSN for only $50 and ordered the concentrates online (Rio Cola concentrate) and followed a recipe to make the syrup. It is so good. It will make 15 liters. I am so happy because one thing I missed was soda.