Maybe this should be in the Emotional Support section

General Support
1

I have been fighting this for a few weeks now because I don't want it to be so. But, I'm worried Enbrel isn't going to be working for me much longer. I kept thinking it's all because of my back not feeling good and the pain is sort of radiating out from it, but then my middle joints in my hands started feeling stiff during the night and when I wake up I need to stretch them. The stiffness goes away quick enough, but for the past 4 days they've swollen so bad I can't get my rings off. For awhile, my rings were nearly falling off! A lot of other things are hurting, too. I'm having a hard time walking because my left leg hurts so bad. Shopping has been a b##!!% these last couple days, and I get embarrassed, too, for how I limp. Last evening shopping with my daughter my arm got so sore carrying my purse (which really doesn't have a lot in it!) And now my shoulder is sore.

I have been trying so hard to stay positive about this. My psoriasis is still where it's been, so I keep hoping the PsA isn't really coming back, but I can't ignore these symptoms.

I guess I should be in the E Support section because I'm bawling my eyes out. Sorry for being such a baby, but I feel so let down.

I'm gonna tell myself it'll be okay.

This is all because of that damn cough I caught that took forever to get rid of. Please tell me this is just a flare and it'll pass.

Luckily I have a couple extra injectors so I can give myself two shots this week.

Okay, I have to stop this now so my husband doesn't catch me crying.....so glad I have you guys to whine to. I'd be a worse basket case if I didn't.

Thanks for listening! Love you all! Happy Sunday! Ttyl

1 Like
2

Grandma J, I'm so sorry to hear that you are feeling bad. Unfortunately, as you know, I am new to this and I cannot offer you advice on medicine or say something like "this has happened to me too with the medicine, it will pass". I really wish I could!

But I can tell you that I can imagine how you must be feeling. I have been where you are too, maybe not yet with PsA but with all my stubborn conditions and diseases. And I know the frustration when you think the treatment isn't working and the disease is ready to come back, and the horror that accompanies it. I had those dark, dark days where I thought the pain/discomfort/fatigue etc I felt would never pass, or I would never get better, or if I was feeling better I was sure that everything would turn bad again, even worse (and to remind you that in all of those conditions I was told by the doctors that I would have it for life, there was no cure etc, so I also know the horror of that also).

And if you feel like crying, sometimes it is best to cry so you can get it out of your system and start fighting again... I hope you feel better soon!

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Grandma J, I don't know whether the Enbrel is running out of steam for you or whether the best we can hope for is a waxing and waning of relief.

As you know I'm on Simponi, my second biologic, after Humira didn't work at all. Sometimes I think the Simponi is doing just fine and then, more often than not, I get pains and swelling I don't think I should be getting and I feel back at square one ...... and then it all comes around more or less again.

One thing I have noticed is that if I've been a bit under the weather, such as a bit of a cold, I seem to get more pain and swelling again. I remember you've been talking about a cough just recently so maybe you're a bit below par and it's triggering a flare.

Dry those tears, try not to worry, it's too soon to be sure one way or another. Be kind to yourself and try not to let the stress of Christmas make things worse (could this be anything to do with it?????).

And worse case scenario, you're only on your first biologic so there are others you can move on to.

Sending you lots of gentle hugs. Jx

4

Thank you, ladylazarus, Jules and Sybil. I so appreciate your encouragement! What would we do without each other? I don't dump this crap on my family or friends. For one, they don't understand because they don't have this disease, and two, I don't want them to feel sorry for me if they see me sad, and three, they would worry so much if they knew I was sad.

So, sorry you guys get the brunt of it!

I agree, LL, about the darkness surrounding knowing you have something incurable. I don't have other diseases, so I can't even imagine what you've been through! You are very strong.

Jules, you are probably right about the waxing and waning with the disease--even while on a biologic that seemed to be working so well at first. I do think my immune system fighting that chest cold had something to do with this.

Hey, Sybil, we are so much alike--even the "Jones" haha! Wink! You started Humira in July, right? That's when I started Enbrel-July 3rd--I'll never forget that date it's so etched in my memory of the day a miracle happened for me. I think that's why it's doubly tough on me to think it might stop working and I'll have to go back to feeling like crap again. Sybil we are also alike in that we both probably had PsA for a longer time than we recognized. And, I too, wouldn't say it was horrendous pain for the most part. Just nagging pain that gets to you after you've tried to ignore it and fight through it for a long time.

What a day it's been! First, just completely falling apart having some pain and swelling that just brings back horrible memories. Then, today is the day the granddaughters came over to wrap my presents. My daughter and her new husband and our son came over, too. The men watched the vikings game and we Girls all wrapped. We had a great time--a lot of laughs--and I actually felt good and ignored the stiffness. They all make me so happy always. Thank God for them, too!

As soon as they left, I wanted to check back with you guys.

Christmas time doesn't make me sad, but I have been really busy and I'm hoping I can relax after the holidays and hopefully my PsA pain will subside. Although, I do think I'm better off keeping busy.

I guess because Enbrel worked so good at first it would be such a let down for it not to work. But, like you all said, there are so many other options that I don't need to feel defeated yet. It's also extra hard when you have tough parents. My mom is going to be 90 in February and she has an easier time walking than me right now! I'm hoping my bad leg is just a temporary thing and I'll be walking okay again. It's humiliating for me to walk like that in public. I don't look like an unhealthy person otherwise.

Also, I just realized this. I've been having a lot of trouble stumbling on words I can't recollect while I'm talking to people. It's happened at least 5 times in the past week where I couldn't think of a word. One was "cotton candy", another was "macular degeneration" and I can't remember the others (haha hmmmm). That hasn't happened to me in several months, though.

Anyway, I'll be okay. It does feel good to get these worries off my chest. There are so many different scenarios with the biologics, and mine isn't unlike a lot of others. It's good to talk these things through and know there are other people who have a similar story. I'm going to try harder to think positive... I've said that before, but I know it could help me feel better.

Take care, and thanks again!

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Hey again Grandma J,

Look what having a nice day with your loved ones have done for your state of mind! I guess it's allright that they wouldn't understand (and I guess we can't expect them to, it would be unfair to them). But just that feeling of being loved no matter what gives you strength to fight another day. And I believe it comes with being "human" you know, to push through everything, no matter how big or small, to find another way, to find a way to make peace with it, to survive, each and every day. We just have to do it more, we just have to do it consciously. What makes us different is that we are aware that we are fighting, we are aware that we are struggling, we are aware of our greatest weaknesses and yet we know what our true strength is as well! We know how strong we are, even though we forget it sometimes.

So remember your strength, even when you don't feel it, because if you remember it, I guarantee you that it will come back! Take care Grandma J, I hope you'll be feeling much, much better soon! :)

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LL, thanks for the pep talk! I appreciate your kind words!

Anyway, I went to the drug store and got a few things. First, the calcium citrate + D3 to stop the osteoporosis my doc said I'm headed for. But, the best thing I got is some Zicam, which is the zinc spray to use when cold symptoms start. I'm so afraid of catching another virus that I would wear a mask if people wouldn't look at me funny. At least I'll have some hope, if only slight, of getting over the next cold I have; which, hopefully will not happen anytime soon.

I also purchased children's vitamins with extra C. I can't take adult strength vitamins--they give me horrible pain in my right side. Do any of you take a multivitamin? I haven't for years. I really haven't thought they were necessary if one has a healthy diet. Do you think it's a good idea to take something that boosts our already overactive immune system? I won't take them if you tell me it's unwise to do so. I could give them to the grandkids.

Oh and I also bought a "bed buddy". It's a heating pad you microwave. I have it around my neck right now and it's staying hot for quite awhile. I use an electric heating pad alternating with a cold pack for my lower back, but this bed buddy is perfect for other places.

Thanks for joining my pity party this morning (it was morning here anyway). I have a better attitude now, and hoping the extra Enbrel shot I took today will help get me back to my old "new" self again! :-)

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Hugs to you! We all need a pity party every once in a while. Let me tell you, I could throw a big old bash today.

Vitamins - it might be helpful to get some bloodwork done to check vit. D, B6, B12, and folic acid. These are often "off" in people with autoimmune issues and can make a difference in energy levels and mood.

I did much better on Enbrel, but then it did stop working for me. Doctor pushed to put me on Remicade, which worked so much better for me than Enbrel. I'm currently off all meds (and trying not to panic) while undergoing neurological diagnosis. You have so many options open to you if Enbrel isn't doing its thing. It is probably worth a call to your rheumy with your concerns.

8

I'm feeling better today, even though my fingers are still swollen too much to get my wedding ring on.

There is one weird problem. I'm having a harder time walking. My left leg does not want to go! It's crazy because the back/butt pain isn't very bad anymore--my leg doesn't seem to have much strength and it gets very sore from walking. I finally gave up shopping, called my husband to tell him there was no way I could stop at the grocery store for a few things, and headed home.

The Enbrel has definitely kicked in today, and that I'm thankful for. I know that my leg problem almost definitely stems from the protruding disc, which thankfully isn't causing as much pain as in the recent past.

I tried calling my p.t., but they didn't answer so I didn't leave a message. I'm going to be positive about this. After all, it seemed as if the flare I'm getting over had to come to a head before it subsided. I'm sure this will get better, too. I do have a question. Can there be permanent nerve damage from a protruding disc, or is this something that can/will disappear? My husband has a bad back (had two fusions) and I know he has stenosis in his spine. He doesn't limp, but he tells me one of his feet is completely numb.

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Grandma J, if I'm not mistaken, what you mean by protruding disc is the same thing I mean with herniated disc. If that is the case, yes, it can cause serious nerve damage in severe cases. Actually I have been afraid of that for years now, everytime I felt the pain or the numbness. But then it went away. Maybe you should consult with your doctor about that if it doesn't get better. If it gets better, then it's ok I think.

And as for nym's suggestion about the vitamins, I took vitamin B all summer (a mix of B1, B6 and B12) mainly for my memory issues. And I felt much, much better. My memory was much better as well. Before taking it I kept referring to everything as "the thing" which was pretty embarrasing :) And I had forgotten my own name for a couple of times, even though it was just for a second :D So I think it might help you with your trouble recollecting words as you mentioned earlier. Worth a shot. The doctor also told me the excess vitamin B does the body no harm, it passes out with urine.

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I completely know how you are feeling. I started feeling pain about 2 weeks ago in my lower back and I’ve been in a full blown flare up for about a week and a half now. I’m so frustrated. The pain is unrelenting. I’ve been taking Norco, but it only helps so much. I’m totally exhausted and not being able to workout is killing me. I keep trying to tell myself that it will get better, but when I’m in the thick of it, the thought of not being in pain seems impossible. My husband is so sweet and supportive, but he can’t understand what it’s like to be going through it. It has been up and down like this for two years. One month I’m able to run 6 miles and two months later I can barely walk around the block. I’ve switched to a rheumatologist through University of Chicago, and I’m just hoping they can find a treatment that will work and I can finally get off steroids. I’m so sick of being in pain.

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Thanks so much, nym, for the information about the B vitamins and Vitamin D. My internist told me to start taking Calcium and Vitamin D, so I'm trying to remember to take them twice a day, I'll add the B vitamins also. It couldn't hurt!!

I hope your neurological tests show more good results and you can go back on Remicade soon. I guess we just have to accept the ups and downs of having a disease. I'm definitely having a hard time coming to grips with not being healthy. I had so much energy and was and still am a very busy person. Now I'm slower so I don't accomplish as much as I did just 6 or 7 years ago. And, I know it can't be blamed on my age catching up on me because my parents were as active as most 30 year olds in their 70s. My mom is still going strong headed for 90 in less than 2 months!

Ooops I'm dozing off here. I'll come back tomorrow if I get a chance, but it'll be Christmas eve! Merry Christmas!

Omg I actually did fall asleep for adding this! Well, its only about 12 hours later...



nym said:

Hugs to you! We all need a pity party every once in a while. Let me tell you, I could throw a big old bash today.

Vitamins - it might be helpful to get some bloodwork done to check vit. D, B6, B12, and folic acid. These are often "off" in people with autoimmune issues and can make a difference in energy levels and mood.

I did much better on Enbrel, but then it did stop working for me. Doctor pushed to put me on Remicade, which worked so much better for me than Enbrel. I'm currently off all meds (and trying not to panic) while undergoing neurological diagnosis. You have so many options open to you if Enbrel isn't doing its thing. It is probably worth a call to your rheumy with your concerns.

12

Hey, LL, thanks! I know it's Christmas eve but I'm taking a break from baking for a few minutes. Its 3 p.m. here and we don't celebrate Christmas until tomorrow. We'll go to mass at 9 p.m. so I have lots of time on my hands to get everything done....

I do intend to take the B vits, too. This tripping up on simple words is so annoying. I have to tell you, forgetting your name must have been scary! Last January at work one day I was submitting a form to be sent to our business office and I could not figure out if it was 2014 or 2015. That was my worst day ever--I was truly in a fog. Its bad enough when you catch yourself accidentally writing the old year in January, but a whole year ahead? That entire day I couldn't think straight and couldn't figure out some routine things I do. I actually thought I was having a stroke or something! And it had nothing to do with not getting enough sleep, because I always get about the same amount, which isn't enough according to what is recommended.

Anyway, I noticed a huge improvement as soon as I started Enbrel, but now that I've been not feeling so good, my brain's been acting up!

ladylazarus said:

Grandma J, if I'm not mistaken, what you mean by protruding disc is the same thing I mean with herniated disc. If that is the case, yes, it can cause serious nerve damage in severe cases. Actually I have been afraid of that for years now, everytime I felt the pain or the numbness. But then it went away. Maybe you should consult with your doctor about that if it doesn't get better. If it gets better, then it's ok I think.

And as for nym's suggestion about the vitamins, I took vitamin B all summer (a mix of B1, B6 and B12) mainly for my memory issues. And I felt much, much better. My memory was much better as well. Before taking it I kept referring to everything as "the thing" which was pretty embarrasing :) And I had forgotten my own name for a couple of times, even though it was just for a second :D So I think it might help you with your trouble recollecting words as you mentioned earlier. Worth a shot. The doctor also told me the excess vitamin B does the body no harm, it passes out with urine.

13

Teachgirl, I hear ya! But I hope your back is getting better. I've been babying myself as much as possible, although that's hard to do during the busy holidays. Walking in stores has been so weird--it's like slow motion! I don't want to be so slow at my age. Especially since I'm not overweight--well maybe 5 lbs., but I'm just not ready to accept this. I want to push--that's my strategy-but to also remember to take it easy, no lifting, no fast twists or turns--running is impossible anymore, but that's OK. I have to try to stop feeling sorry for myself, too! As soon as my pain flares up, I just start worrying and feeling hopeless. God, what would I do if I was faced with a real hopeless situation? Oh, man, I'd seriously fall to pieces. Supposedly God only gives you what you can handle. God, please be kind and don't give me anymore! Haha, I doubt if he's listening to my silly request!

Anyway, I am feeling a lot better because I've been resting and using heat and ice a lot. Monday morning I woke up with bad pain in my ribs--it felt like knives going between each rib. I thought, OK here's another sign my Enbrel is betraying me! I did a lot of stretching, heating pad and resting for about 4 hours, and it finally stopped hurting. My fingers are still too swollen for my rings. I had my wedding ring resized about a year ago. Guess I'll have it resized again! I think it was a 7 when I got married and now it's a 9.5. Big fingers--knuckles--I have.

Well, you just take care of your back. I sure hope your flare lets up and you can enjoy Christmas. Nice that you have a supportive husband. I hope your new rheumy figures things out. I don't know your history--have you taken any biologics yet? Hopefully, you can get on with a more normal life! I feel fortunate that PsA didn't attack me real hard until I was in my 50s. Our youngest child is 23 and she has so much fatigue. I'm hoping its only due to the stress of college.

Merry Christmas!


Teachgirl21 said:

I completely know how you are feeling. I started feeling pain about 2 weeks ago in my lower back and I've been in a full blown flare up for about a week and a half now. I'm so frustrated. The pain is unrelenting. I've been taking Norco, but it only helps so much. I'm totally exhausted and not being able to workout is killing me. I keep trying to tell myself that it will get better, but when I'm in the thick of it, the thought of not being in pain seems impossible. My husband is so sweet and supportive, but he can't understand what it's like to be going through it. It has been up and down like this for two years. One month I'm able to run 6 miles and two months later I can barely walk around the block. I've switched to a rheumatologist through University of Chicago, and I'm just hoping they can find a treatment that will work and I can finally get off steroids. I'm so sick of being in pain.
14

I tried to add this earlier, ladylazarus, but it disappeared.I think a disc protrusion is worse than a bulge but less than herniated. My husband told me that, so not sure how accurate it is! I did see my MRI and it definitely was pressing on my spinal cord and impinging ? it.

I hope you can get some help for that painful back of yours, too.

ladylazarus said:

Grandma J, if I'm not mistaken, what you mean by protruding disc is the same thing I mean with herniated disc. If that is the case, yes, it can cause serious nerve damage in severe cases. Actually I have been afraid of that for years now, everytime I felt the pain or the numbness. But then it went away. Maybe you should consult with your doctor about that if it doesn't get better. If it gets better, then it's ok I think.

And as for nym's suggestion about the vitamins, I took vitamin B all summer (a mix of B1, B6 and B12) mainly for my memory issues. And I felt much, much better. My memory was much better as well. Before taking it I kept referring to everything as "the thing" which was pretty embarrasing :) And I had forgotten my own name for a couple of times, even though it was just for a second :D So I think it might help you with your trouble recollecting words as you mentioned earlier. Worth a shot. The doctor also told me the excess vitamin B does the body no harm, it passes out with urine.

15

Hi Grandma J, sorry for the late reply (I guess I say this a lot) but I've been really busy and again there's the time difference! :)

First of all, Merry Christmas! :) We don't celebrate it here but I know it's one of your biggest holidays (if popular culture is the place to learn such things :), so there it is! I hope you have a beautiful Christmas :)

Well, if my herniated disc is worse than your protruding disc and I'm still standing, I'd say you're ok :) But of course you absolutely have to see a doc if it doesn't get better.

Forgetting my name was frightening, yes. But the most frightening time for me was, when I was talking with my bf, and in the middle of the sentence I said something like "aghragagahala". I had completed the sentence in my head but what came out of my mouth was that! And of course we laughed pretty hard about it, but I was terrified for a couple of days! Thankfully I'm much better right now, and vitamin B played a huge role in it I think. So definitely try vitamin B :)

16

Hi ladylazarus. It was a very nice Christmas and it's over now. It's one of those few times during the year we can all get together, and we all treasure it.

I had an experience like you explained but it was when I was pregnant with our first child 36 years ago. I had been having weird visual disturbances off and on during the day. That evening we were visiting my husband's family and I said something really bizarre during a conversation--I had intended to say something relevant to the conversation, but a whole different sentence came out which was totally unrelated. I got so upset we went to the ER to see why this happened along with the visual disturbances. Nothing was figured out!

Sometime later someone suggested it was TIAs. I had been on birth control pills before I got pregnant.

Over the years a few times I had weird visual disturbances with zig-zaggy lines in my peripheral vision and a bright light in my vision that prevented me from being able to focus on anything. That turned out to be migraines without the headache. I wonder if anyone else has ever heard of this. I don't think it's PsA related, but who knows? I guess if PsA can cause us brain fog it can do other things with our brain.

I'm not too quick to make doctor appointments, but I'm thinking about seeing my rheumy sometime soon. I just don't feel as well as I would like. However, I don't want to be too quick to give up on Enbrel. I'm gonna try to be patient and hope things settle down. MN winters are horrible and it wouldn't surprise me if the fluctuating temps going from extremely unseasonably cold in November with tons of snow to now unseasonably warm in December with rain nearly every day. It never rains in December here! Just crazy climate change weather!!!

I hope you had a nice day and your weather is more tolerable.

17

Hi, I'm glad you had a nice Christmas :)

It's weird, I too have those weird visual disturbances, and they are very much like you described. In fact I had them just before I was diagnosed with PsA, I had the lights and the dots and the zig zaggy lines and blurred vision. I had read in this forum that PsA could affect the eyes so the first thing I did when I had the strength (my fatigue was unbelievable) was to see an eye doctor. But he said there was no sign of iritis or uveitis, it can happen sometimes. Now you got me thinking. I am still disturbed with my vision a little. Also, my eye number changes constantly. I am shortsighted and even though the number should not go back, mine does! (Like, from 1.75 to 1.50, where it should be the opposite). My eye doctor had mentioned it could be because of diabetes, but I don't have diabetes. I have another autoimmune disease :)

The weather here is just depressing. Always cloudy, most of the time rainy. It should have snowed up to our ankles by now, but no snow yet. Just a couple of flakes the other day :) I'm waiting for the snow if I can't see the sun. I just hate cloudy weather! :)

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We finally got some new snow late yesterday. Brightened things up a little, but the blurred vision is still a problem. I wish there was just one big combo pill we could take every morning that would make all of our symptoms disappear!