Well, not so good news here, but I'll keep my hopes up for now. My rheumy told me yesterday some of my blood tests are showing that my immune system is losing strength. Specifically, my WBC count is now 3.6 - it had dropped a few months after I started Enbrel last year from 4.7 to 3.8. (Normal range is 3.7 - 12.1). My ABC Neutrophil (ANC) is 1.7, which is down from 3.1 (Normal is 1.8 - 9.2).
When I asked him what this means, he said if the numbers continue to drop he'd have to take me off Enbrel!
This is interesting, because when my dermatologist looked at those "off" numbers last month she said they're just a sign that I've got some allergies and that explains the small patches of hives I've been getting on my hands and arms lately (I've been getting these hives for a few months.)
So, what can I do to boost my immune system--or should I even want to boost it? I can't take an adult vitamin because they give me an unbearable pain in my right side, but I do tolerate children's vitamins okay. Should I take extra vitamin C? I already take 2,000 mg of fish oil and 100 mg coq10 every day. I've avoided vitamins since I found out I had PsA, thinking my immune system didn't need any help. Should I try and get more sleep? I average 5 - 6 hours at night and rarely nap during the day. I just can't think of going off Enbrel. I asked him if I went off Enbrel and those test results improved, would I be able to go back on Enbrel, and he said no.
I guess I shouldn't worry about it--he's going to recheck my blood in 2 months. But, it would be nice to get those numbers back into the normal range by then! :-)
Hi GrandmaJ, that we may have to come off our bio's is the news we all fear but I should think that it is a really good idea to try and give your overall health a boost.
Five to six hours sleep is likely not enough, I've always needed 8+ hours but even more so now, so can you try getting some more rest? I nap during the day if needed as well. And how is your diet? I'm not obsessive about food but try to eat freshly prepared food over processed and lots of fruit and veggies. I prefer to get all my vitamins and minerals the way nature intended and I recently researched and found a study in an article on supplementation:
One study in 2012 looked at this question and found that in a clinical trial which compared natural broccoli to the equivalent broccoli extract; the natural product produced four times the amounts of the healthy polyphenols in the blood and urine compared to the artificial product. This suggests that the interplay between our food and the bio-availability of vitamins and nutrients is a complex one, more complex than science can currently explain. Our intestines are designed to gradually extract vitamins and nutrients from our food; but what of the sudden chemical surge that a handful or two of pills and capsules has on our stomach?
If you do decide to take any supplements please check them with your docs and you may also want to check that nothing you plan to take, or currently take, has an interaction with your other meds or eachother. WebMD have a good patient information resource on this Vitamins & Supplements
You're always so busy, I get tired just reading what you've been doing, so I hope all you need is a rest, a vacation, to be treated and taken care of and your body will bounce back.
Thanks Jules, I appreciate your suggestions. That makes sense our intestines aren't designed to digest handfuls of artificial supplements. My diet is sort of a mish-mash of good and bad. I love all vegetables, and for protein eat more beans and nuts and minimal amounts of meat--not a big meat-eater at all. For dairy, I prefer cheese. My downfall is I often eat fast food, and too many sweets! For lunch at work 3 days a week I usually eat a packaged frozen dinner, which probably isn't very nutritious. I drink tons of fresh water.
The sleep--I don't even know if it's possible for me to get more. I could try to shoot for 7 hours, but my problem is because my days are so busy, when I finally get to sit down and relax and have alone time in the evening I either watch TV, do puzzle books or go on my favorite website until the wee hours ;-)
I've always had the thinking that life is going by so fast I need to get in as much awake time as possible. It's genetic, I think, because both of my parents were always in the go! I'm gonna try harder to eat better and he a little more sleep, cuz the thought of going off Enbrel is depressing! :-(
I tend to think that there's not a lot that diet, sleep etc. can do to boost those numbers. I hope I'm completely wrong on that score. But if you think you need more rest and a better diet though, then go for it, certainly can't do any harm.
It's difficult to know what to believe when two specialists appear to disagree. Did you run your dermy's opinion past your rheumy?
I know how much you appreciate Enbrel, I really hope things improve. Can you contact your rheumy and / or dermy again to ask for further advice?
Sybil, my mind just sort of went blank when he told me that. I demonstrated how stiff my arms from my shoulders down to my fingertips used to get and reminded him how painful it was to move after just being still for a couple minutes. I'm sure he's heard that from more PsA patients than me. He just gave me a weird smile like as if to say, sorry, we'll cross that bridge when we come to it.
I know a lot of you guys have way worse problems than me--I'm still leading a fairly normal life--I'm not as fit as my parents were at 61, but I'm able to do almost everything I did before PsA. I might do it with feeling like crap during or afterwards, and I can't lift heavy things or walk very far without excruciating pain in my feet, but I know so many of the members and who knows how many on earth are suffering from PsA who are extremely disabled and disfigured. Looking at me you wouldn't see any crippling but a couple of crooked, arthritic fingers. But, by the time I went on Enbrel I was at my wits end with the pain and psoriasis and I don't think it would have been long before I couldn't function normally. So, you can understand why I don't want to go back to that place again.
I will message my rheumy to ask him why the dermy associated my low levels with allergies.I also think it's weird that I keep getting hives--I never had them before. Thank you for your suggestions!
I'll be interested in the explanation about hives, GrandmaJ, because of my hive like reactions to these mozzie bites ..... all on the same allergy spectrum me-thinks.
PsA affects us all differently and some obviously face more challenges than others. But I do not believe any of us should have to justify how bad the disease makes us feel at times. That said, I do it too .... but hey, just saying that I'm sure we are all rooting for you. I think you are very realistic about it all.
My mind went blank at dermy appointment. I think it's the 'please, not another thing' effect. But then we get back into fight mode & start processing everything we need to process in order to do the best we can. Glad you are going to contact your rheumy. He should understand that this is something you need to get your head around. Wouldn't it be nice if it turns out to be something and nothing? Hope so!
Sybil, my mind just sort of went blank when he told me that. I demonstrated how stiff my arms from my shoulders down to my fingertips used to get and reminded him how painful it was to move after just being still for a couple minutes. I'm sure he's heard that from more PsA patients than me. He just gave me a weird smile like as if to say, sorry, we'll cross that bridge when we come to it.
I know a lot of you guys have way worse problems than me--I'm still leading a fairly normal life--I'm not as fit as my parents were at 61, but I'm able to do almost everything I did before PsA. I might do it with feeling like crap during or afterwards, and I can't lift heavy things or walk very far without excruciating pain in my feet, but I know so many of the members and who knows how many on earth are suffering from PsA who are extremely disabled and disfigured. Looking at me you wouldn't see any crippling but a couple of crooked, arthritic fingers. But, by the time I went on Enbrel I was at my wits end with the pain and psoriasis and I don't think it would have been long before I couldn't function normally. So, you can understand why I don't want to go back to that place again.
I will message my rheumy to ask him why the dermy associated my low levels with allergies.I also think it's weird that I keep getting hives--I never had them before. Thank you for your suggestions!
Well, that’s surely not good news! You were a major part of me wanting to try Enbrel as my first bio and a big thank you for that! I agree with Jules that more sleep and definitely small changes ( unless you already incorporate them) in diet can do wonders. O have been on an avacado kick and notice real changes in inflammation since eating the super food. Although I am sure there plenty of other foods to help they can work. I permanently cured my chronic anemia problem with small diet changes in the past which was so much easier than the dreadful iron pills they prescribed. Hopefully you can turn it around without having to give up your best med!
Try to take good care of yourself, GrandmaJ--more sleep, more supportive diet/supplements, etc. And if you have to go off Enbrel there are other things to turn to.
As I think I've shared with you before, Enbrel was a miracle drug for me until one day it just wasn't. We tried upping the dosage and adding other meds but ultimately I had to stop taking it and the other meds for a while. Then I switched to Humira. It took a while to get the dosing at the right intervals but now I take it weekly (more often than the typical dose but not unusual) and I feel as good as I did when I was on Enbrel. So don't lose sight of the fact that all is not lost if Enbrel isn't doing it for you any longer!
Thanks, you guys. IDK what I'd do without you! I just got home and had a chance to read my rheumy's reply to the message I sent him this morning. His reply was confusing. He thinks I want to go off Enbrel--for Pete's sake I told him that's the last thing I'd want to do!
But now he's got me really worried-he mentioned I have neutropenia, and I made the mistake of looking that up on the Mayo Clinic website. I messaged him back to explain neutropenia.
I feel like I'm on the way out or something. I've never been sickly in my life until all this crap. One thing I should mention is my hgb is really good--it's usually around 15, so I'm not anemic.
I'll try to do all those good things like get more sleep, and Rachael, if avacados help, I'll eat them. Janeatiu, I'm concerned that if my WBC and those other labs go down any further he won't put me on another biologic. :-( I hope I'm wrong. Sybil, I'm hoping it's "something and nothing", too. Now I just have to try not to worry too much for the next two months--that's not going to be easy!
GrandmaJ, my feeling is that if he's leaving it two months to see if this is just a 'blip' then you are definitely not on your way out! If you can do everything you can to give your body a boost in the meantime that has got to be good. And yeah, if you like avocados (and I do), they are packed full of all kinds of healthy fats and goodness. My dietician friend tells me to eat at least half and ideally one every day :-)
Thanks, Jules, I'm ready to try avacados!!!! But, I don't think it's a blip because he showed me how my numbers were normal a year and a half ago, but with each blood test since I started Enbrel they've gone down. The recent labs were the first time they've dipped below the normal range. I know I shouldn't worry--it would probably be a blip in my treatment of PsA and psoriasis between going off Enbrel and starting some other treatment. Which could very well be narcotics or excessive alcohol, or.......medical marijuana, anybody?? I'm not kidding!
I know it is a worry when you've had so much relief from Enbrel. I hope it is something of nothing but even if you do have to take a break from Enbrel I'm sure your great doc will be working on another treatment strategy for you. We'll be here to help you through the next couple of months.
You are not on the way out. We all feel like that sometimes. I even start planning what sort of family I'd like to be born into next time around just in case there is such a thing as reincarnation. But clearly I'm a complete idiot because here I am, in the pink!!
Try not to worry. If there was cause for worry I'm sure your rheumy would let you know. No worrying! Be happy! PsA throws 'stuff' at us from time to time, what's going on with you does not sound like the worst stuff at all. You've worked hard to stay well and you flipping well deserve to enjoy it.
Grandma J said:
Thanks, you guys. IDK what I'd do without you! I just got home and had a chance to read my rheumy's reply to the message I sent him this morning. His reply was confusing. He thinks I want to go off Enbrel--for Pete's sake I told him that's the last thing I'd want to do!
But now he's got me really worried-he mentioned I have neutropenia, and I made the mistake of looking that up on the Mayo Clinic website. I messaged him back to explain neutropenia.
I feel like I'm on the way out or something. I've never been sickly in my life until all this crap. One thing I should mention is my hgb is really good--it's usually around 15, so I'm not anemic.
I'll try to do all those good things like get more sleep, and Rachael, if avacados help, I'll eat them. Janeatiu, I'm concerned that if my WBC and those other labs go down any further he won't put me on another biologic. :-( I hope I'm wrong. Sybil, I'm hoping it's "something and nothing", too. Now I just have to try not to worry too much for the next two months--that's not going to be easy!
Don't forget, too, that each biologic targets a slightly different part of the inflammatory response process which is why many of us have to try to find the one that works best for us. That doesn't necessarily mean that you will have to be off them altogether.
Omg, where did that reply go???? I have a habit of starting one and getting interrupted fifty billion times by events at home, but what I was trying to say.... Sybil, I know I should try not to worry. Actually, I will most likely put the worrying about me aside so I can worry about a few other things going on right now. Thank you for your kind encouragement. :-) Janeatiu, it's good to know another biologic works a little differently, and who knows, maybe a different one would work better than Enbrel. Enbrel worked so good for me right off the bat that sometimes lately when my feet are hurting badly and my fingers are throbbing, I find myself wondering if Enbrel is slowly, slowly wearing out. I definitely don't feel as good as I did last July and part of August before my back went out. I honestly felt completely PsA-free during those first weeks. It sure would be nice to get enough knowledge about PsA that the experts could say, ah ha, this is EXACTLY what you have and THIS is the biologic that will cure you! Until then, we'll all just have to deal with all the ups and downs of a very unpredictable disease. I didn't mention, my rheumy had also said if he took me off Enbrel there's always the possibility of remission! So, it could turn into something good!
Sometimes it can be so hard not to worry about returning to our worst state again and even scarier to imagine being worse off than that. You have a great attitude and strong fight in you to keep from being there again. Worry less, live more and things will seem less stressful. I can’t count the days I wasted worrying about things (lots of things not even just PSA) rather than enjoying where I am.we are always here for you!
Grandma J I just saw this discussion! I'm so sorry your blood results were weird! I hope it's just allergies like your dermy mentioned... Did I tell you that I had a horribly high basophil count the last time I saw my rheumy (if I'm not mistaken, it should have been around 1.8 or something and mine was 18!). And it meant horrible, horrible things, the worst being bone marrow cancer and stuff, but then it turned out to be a mistake the "blood-counting machine" did. But I can imagine with using a biologic like Enbrel, it's no use me telling you "oh it's probably nothing" because this is some serious stuff, and if the medicine is going to cause you big trouble, maybe it is better to get off it, if it comes to that I mean. I don't know if they let you use other biologics if your blood tests are like that, but I'm sure anything would be better than a completely compromised immune system and the problems that could come along with it! So please take care of yourself, and again, I'm sorry you're having a hard time :(
Ask to have the blood work repeated with both a manual and automated differential blood count. Automated counts are not accurate when biologics are being used except for screening. The way the proteins of the biologic bind changes the appearance of the WBC just enough that the " machine" misses some of them. In any event, I think your Derm is likley on the right track. Your tests are borderline in any event.
Keep in mind you have to my knowledge not had any unusual infections. I recall you mentioning some UTI s which can actually cause this situations.
Thanks, Rachael, that's a nice thing to say....and, I'll try not to worry so much.
LL, I'm hoping I can stay on Enbrel, but if it stops working, there are other options. I shouldn't be so negative. :-)
Lamb, I had been fortunate to have such good and quick results from Enbrel. I think that's why it would be such a let down if I'd have to stop using it. I know a lot of people go through this same scenario, and I'm sure they do well on a different biologic. I know life isn't always a bed of roses, and I should accept things as they come. But, if you remember things I was saying last spring (2014) before I went on Enbrel--I was worried about disappointments down the road if I did go on a biologic.
I guess if I do have to quit Enbrel, instead of saying woe is me, I should be thankful for the goodness it brought to my life. Because this past year has been at least 80% PsA and psoriasis free--something I didn't expect at all! AND, I'm really jumping the gun here--I'll be sure to ask my doctor to do both tests, I didn't know that the tests could be off. Thank you for your comments. I appreciate it. :-)