Back from gastro appointment - she doesn't think I have Autoimmune Hep, which is good. She, to appease my rheumy, scheduled me for a liver biopsy (Oct 18th) and will have the hepatologist review my file. If he doesn't think I need a liver biopsy, they'll cancel the biopsy and talk to my rheumy right away so I can resume PsA meds asap. If not, we need to wait for results of the biopsy to see if I can go back on PsA meds.
So ... good news that it doesn't look like I have autoimmune hep (and have lost 30 lbs!), but bad news in that I need to wait at least another couple weeks to know if I'm restarting PsA meds.
***I was going to post the above, but got interrupted and never hit Add Reply .... then ended up taking a nap ... and woke up in extreme pain and not able to raise my arms - I'd been having shoulder/neck/arm issues for few days, and they got MUCH worse, quickly. So now, 6 hours later, I'm adding the below to my post ... ***
Aaaaaand....we just got back from the ER. My husband dropped me off, took the kids to my parents for the night, then came back and met me in the ER. I took a nap this afternoon because my body was hurting, especially my shoulders/arms and i thought it might help, and woke up in extreme pain and unable to lift my arms.
I got injections of Dilaudid (Hydromorphone) and Ketrolac (Toradol) and was given Prednisone due to the extreme swelling in my shoulders and base of my neck. I have prescriptions for prednisone (five day burst), ibuprofen and vicodin. The nurses and doctor just kept saying, "what you really need is to get back on Remicade"....which is what my gastro said this morning and my rheumy said earlier this week. Duh. If I continue having problems, I'm to call my rheumy on Monday to see if I can get injections in my neck to reduce the swelling, and the ER doc highly recommended I get an MRI of my neck to see if I have fusions going on - but not something that was enough of an emergency for them to send me for it tonight.
Not exactly how I'd planned on spending my evening, but my husband and I now have a child-free night and are trying to make the best of it, even though I have extreme nausea because of the prednisone.
Oh, Nym, I'm so sorry to hear this! You're between a rock and a hard place. I hope your gastro can give you a dx on your liver and hopefully get you back on PsA meds. I feel awful hearing about you in such dire straits and will put prayers out for you.
Make hubby a strong pot of coffee and have him give you a back rub until the predi nausea wears off (which it will before the stimulant effect does.) A night without kids is NEVER to be wasted. Its a rule. You can sleep tomorrow....... Think of all the things to do with those bed pillows and wedges.
Careful with the Vicodin. My drs. say it harms the liver. Praying for a great night to make up for the day. And I'll take good news any day and at any time!
I get to see my Rheumy on Monday, and his nurse has warned me about those funny liver enzymes. He's been on my back for three weeks now. If he wants to take me off meds again I'll scream and then I'll cry. Maybe I'll call his wife and tell her about his meaness. (No, I don't have a clue about her)
Regarding the liver biopsy, done it and it's not a big deal. I was awake the whole time and it only took a band-aid when it was over. No, it wasn't a big band-aid, but a regular one.
Gelita: I'm not supposed to take acetominophen or ibuprofen, but in this case, it was necessary to get me through the night. I feel much better this morning and will resume tramadol once I'm sure the vicodin I took last night is out of my system (I don't need drug interactions on top of all this!).
I'm totally not stressed about the biopsy, I just hope I don't need it so I don't have to wait until the end of October to resume treatment.
Lamb ... LOL. My husband makes the coffee (I seem to make something more like caffeinated mud). We definitely didn't let the night go to waste. LOL
I'm feeling much better this morning. 50 mg of pred is on board, no pain meds since midnight, but will be taking a tramadol at noon before meeting my parents and kids for lunch. I can move my arms with minimal pain, and will definitely take it easy on them the next few days. No wheelchair or cane use, so my legs, hips and back better cooperate! Thank God my husband is home today to take care of housework and birthday party prep (for our fourth child - party tomorrow at Gramma and Papa's house - my poor parents are being inundated with grandkids!!! LOL Perhaps the kids will make gf/df cupcakes this afternoon ...
Thanks for all the love and support. It really means a lot, and this is really the only place I can go to post the nitty gritty of the situation without risking losing things like childcare opportunities. Some people don't understand that although I have a flare like this, it's taken care of and I'm perfectly able to function.
Thank goodness, Nym, that you got help in ER. That's an accomplishment: ER staff can be pretty unhelpful when it comes to pain relief. Good work! I suspect that you were very clear about what was wrong and what you needed.
Hope you were able to wring a bit of enjoyment out of your evening, and I hope you have a comfortable weekend.
Nym - You are my role model for positivity! If that is a word. Fingers crossed that the hepatologist reviews your file ASAP so you can get back on your biologic. In the meantime, wow, what an awesome hubby and kids and grandparents you have. Eat lots of those cupcakes. Glad you still get sugar.
RB... I'm actually pre-diabetic ... so not much sugar for me. Actually, we make them without refined sugar, so that's a bit healthier. LOL (And no, I can't win, can I??? )
Seenie ... The ER staff was great. The swelling in my neck and shoulders was visible, and horrible. When giving me injections in my arm, the nurse told me to relax my arm as much as possible. I told her I was - that my arm was tight due to swelling, not due to me tensing my muscle. It was funny because the doctor came in and told me what he wanted to treat me with, and I really don't like taking meds without knowing specifically what they are and what they do, and especially not 2 injections plus steroids by mouth, and he looked at me, shook his head, and said he'd never had a patient in so much pain want to sit down and discuss treatment options ... they usually just beg him to give them whatever will help ... and then he thanked me for being so clear about my medical history, the meds I was taking (I had them all with me, including supplements - because I had to bring them to my gastro that morning!), and what has and hasn't worked for me in the past. I was VERY nervous going to the ER without a referral seeking pain meds, but it was that bad.
Yes, Nym, I thought you'd probably been pretty clear about your history and what you needed. Being able to list or show your drug collection helps too, I think. (I keep a running and up-to-date list of what I'm taking in my phone. It comes in very handy.)
A lesson for the rest of us! And yes, you're an inspiration for us as well.
As for hard cider ... wish you hadn't reminded me of how much I love that stuff!
I have tried all the meds, creams and lotions so far and nothing helped. I just started Humira on Thursday with the double injection and a single one next week. I'm hoping this helps me (fingers crossed). There were times that I could hardly walk, looking at my feet it looked like I could remove my heel in one big chunk. My hands were hard as rocks and I couldn't bend my fingers to write or hang onto anything. Thank god my insurance company pays 100% of Humira. At $1569 for two boxes (two injections per box) I would be broke in no time! I'll keep posting my results here.
I am sorry to hear that you are not feeling well. And, yes, I had to go off my PsA meds this past winter when I had foot surgery...it came back swiftly and aggressively...hang in there.
I feel like throwing a party - I spoke with my rheumy about my ER visit and gastro appointment and he's putting me back on Remicade!!!!!! He's not even waiting for the liver biopsy, as my gastroenterologist doesn't think it's autoimmune hep. I'm SO relieved. Now to wait for the infusion center to call - hopefully tomorrow morning.
I'm doing ok today...still on prednisone (30mg today), ibuprofen, and should be taking pain meds, but too scared I'll overdo it and set myself back even more.
I feel like throwing a party - I spoke with my rheumy about my ER visit and gastro appointment and he's putting me back on Remicade!!!!!! He's not even waiting for the liver biopsy, as my gastroenterologist doesn't think it's autoimmune hep. I'm SO relieved. Now to wait for the infusion center to call - hopefully tomorrow morning.
I'm doing ok today...still on prednisone (30mg today), ibuprofen, and should be taking pain meds, but too scared I'll overdo it and set myself back even more.
Yes! I have been off enbrel since the end of May and my symptoms have progressively gotten much worse. I am waiting to start on Humera and I am hoping it will get me out of the worst flair I have ever had with PsA. I have been working from home as much as possible, but I am having troubles just doing normal activities around the house. I wish you the best of luck, hang in, and the light at the end of the tunnel is not always a train, so stay strong and you will come out the other side. Keep your head up, sometimes reading these stories is a big help, so you don't feel so alone.