Where is Minnietoty, UB Tough, NCOT?

Hi Lab!!!

So good to see you are still here! I am sorry that your news wasn't better.🙁 Did they indicate what was going on and if you were going to have to switch meds? You were on Remicade correct?

I think that we must all be running on a "bad news" cycle. I am forever hopeful that we will break out of it and things will improve.

I have been struggling with Remicade, Methotrexate and my kidneys. When I don't take methotrexate and wait past 8 weeks for Remicade my blood work comes back good except for the crp. But....they measured my Remicade/antibody level and they both were disappointing. (O on remicade and almost 14 on antibodies) So my GI has said I have to start back on the Methotrexate and have infusions every 6 weeks. He is scared to increase the Remicade dose because of my kidney issues. So this week I took the Methotrexate, was completely out of it until tonight and tomorrow I go in for my Remicade. Methotrexate messes me up for 3 days. I almost hate it as much as the Devils tic tocs and Crohns.😡 I already know my blood work is going to be off because I have been so sick I can't drink. Maybe if I guzzle water during my 2 hour drive down there it might be just OK.

I have been running from place to place, trying to avoid maskless people that want to get closer than 6 feet.lol.. My vocabulary filter is gone. I have started barking out orders...stop right there, don't come any closer, don't look at me like a crazy person for wearing a mask I am immune compromised. I fear for the people I encounter while taking methotrexate and without the filter. Its about to get ugly. New Mexico isn't too bad, Colorado is a little more iffy and Texas is like walking thru landmines. I am so afraid of Covid. So far..in our family we have lost a set of parents, a nephew, a sister in law and currently have 4 other members from 3 different households with covid. These are all educated, intelligent, very careful, vaccinated people. We do not go out except to work or the store, we do not congregate and we are all germaphobs--so this is very scarey for us. 3 were caught at school, the other is unknown. The family members who died, 3 cases were caught from a family member nurse, 1 was from school. So this year....not a good year for us. I pray everyone else is having a better year.

I'll let you all know how Remicade goes tomorrow. Hopefully the others will check in. I love hearing from everyone.

Clo

Hi Lab. It's good to see you again, but sorry about the news :-/ Hopefully you can get back into remission again quickly. Is increasing the dose/frequency of Remicade an option or will you have to switch meds?

@Clo - Had to laugh a bit at "bad news" cycle. Methotrexate was rough on me too, although not as rough as it sounds for you. Are you taking methotrexate in tablet or injection form? Apparently MTX injections cause less nausea and are easier to tolerate than tablets. And apologies for another obvious question, but are you taking folic acid alongside the methotrexate?

The Covid situation is bad in the UK as well. I've had my booster vaccine recently, so am not as worried as I might otherwise have been, but I do wish the government hadn't ended the mask mandate. Now, predictably, most people have stopped wearing masks. Cases are 50,000 a day and rising. Part of the problem was we vaccinated all the old people quite quickly, but barely bothered with teenagers and children. So once they went back to school, they started spreading Covid. This happened last year too. We didn't have vaccination, deaths rose to 2000 a day and we had, in effect, a 6 month long lockdown. I don't think this winter will be as bad solely because of vaccination, but restrictions at some point are looking inevitable.

Meanwhile, I haven't been doing too great myself.

Had a pre-operation health checkup a couple of weeks ago. My ECG was abnormal so my hospital wanted me to repeat it. Got the repeat ECG done today. According to the lovely nurse who did it, it looked much the same as the first one. So whatever was wrong the first time presumably still is wrong. And, indeed, I'm not feeling like the healthiest bunny in the woods. Had to stop my tennis lesson early on Monday, because I was so out of breath and nauseous. Had a bit of chest pain too. Now I know I'm unfit but I don't think I'm that unfit.

I've had good and bad news in the space of 5 minutes.

The good news: I've been awarded my disability benefit for another 3 years until 2024! Don't even have to go to an assessment, which is fantastic.

The bad news: In the same letter they told me I had been overpaid and they would tell me in another letter how much I owed them. Er, okay. I checked my bank account and nothing seems to be out of order: no unexplained payments.

On the same morning (today), I also received a set of blood test forms labelled URGENT from my hospital. But the accompanying letter is a routine one about immunesuppressant monitoring that I've seen many times before, so I'm not sure how much stock to put into the URGENT request. Especially as it's dated 6th October, so it can't be THAT urgent if they waited two weeks to send it. Still, I probably shouldn't ignore it.

@Lab - I'm so sorry about your mother. And Clo, I'm sorry about your losses of course! We've been lucky in the sense that nobody we know has died from Covid, although a few people have been in hospital. One of my cousins was in ICU for a long time, although he had another medical problem on top of Covid to be fair. It was touch and go with him for a while, but fortunately he's out now.

I'm always annoyed when I hear of insurance companies switching patients to cheaper meds. It's a risk, they know it's a risk, but they'd rather save money. That said, patients do flare while on Remicade as well, so this is something that could have happened anyway. Especially in conjunction with extreme stress, like you said.

Lab, no the hospital don't know about the chest pains. I've had them before, but just put it down to stuff like heartburn or being unfit, but now I'm not sure. Especially as a few weeks ago I had chest pain so bad I genuinely wondered if I was having a heart attack. It started in the middle of the night and lasted for hours. I was also pretty nauseous as well. Probably should've got it checked out but I was better the next day, and so didn't bother.

Anyway, if I'm gonna get this blood test done I'd better leave for the hospital now, as the blood clinic shuts at 4:15pm :-/

Hey all,

Have been out of it this week. I had an allergic reaction during my infusion. The GIs office called in the steroid premed but not the benedryl. We tried to contact them via phone and messaging but they did not respond. We gave it a go...I admit it.. I told them to start the infusion as long as they had emergency orders for the benedryl... I was feeling cocky as heck... Until I started clearing my throat, coughing and sweating... Lol.. We stopped the infusion for 20 minutes, used the benedryl and it stopped. My infusions are already going so slow... 4 hours.... And we have added these huge bags of saline. So from now on we are going to make sure I get the premeds. To be extra careful they recommended that I take tablet benedryl for the next 48 hours then we'd reevaluate. Benedryl makes me sleep!! And it gave me noodle arms and legs. Aaagh!!! I felt like just a foggy dizzy head with no body. No bueno!! After 48 hours we stopped and I was fine... But then I had to take methotrexate which makes me sick. But it was only for 48 hours this time so not too too bad. I take folic acid. (Injections are out because if the Pyroderma Gangrenosum risk and the arthritis in both thumbs) We did reduce the amount down to 12 mg once a week. We might go down to 4 tablets next week. The good part.... Get ready to do a Happy Happy Dance!!!!... My Egfr was 84!!! Bad news...Remicade level was at 0 antibodies at 14 or 15. But the methotrexate has always brought the antibodies down in the past so I am crossing my fingers, saying a prayer. And finally today I feel better.

SciFi,
I didn't know you were in Texas!! You are right about Houston. No one wears a mask down there. My niece lives down there and she is so frustrated about mask usage. I lived in Port A. for awhile, eventually we returned to the Dallas/Ft. Worth area for my medical care. There's a part of me that really misses the coast.

Lab,
OMG!!! I am so sorry about your Mom. It's a pain that definitely could throw you into a flare. I still miss my Mom so much and it's been 9 years. It does get better but there are still days where the pain hits so fast, hard, and unexpectedly that it takes my breath away. I wrote down everything...good and bad...about her in a notebook the first year she passed. Today it helps me remember her. I read it once a year now. It does get better so hang in there.

The biosimilar...I knew that insurance companies were going to mandate switching. I don't think its right that they get to play with our health like that. It might take some time for your body to adjust to it. Hopefully the 6mp will help you also.

NCOT,
OMG!!! Chest pains???? Oh you have got to get that looked at...And tell them before your surgery.
How'd the labs go?

Yea on the disability approval. That's a great relief I am sure. I am doing a Happy dance for you. (Good thing none of you can't see me cause you'd never be the same again. LOL.) The paying back thing...yikes! Personally, I would be researching when and where the overpayment was. Remember, they can make a mistake too!

Straydog,
Dare I use the same opening? Yep...OMG... I didn't know. What is going on? When did it start? Are you on any meds? Do they know what's going on or what's causing it? Please let us know how your tests come out. The having tests and then the waiting is just the worse. I don't know how you do it.

On the Covid front...my family members have recovered. Although my Houston neice is still tired and having breathing issues. I have been trying to get my 3rd shot for my vaccine. I had Pfizer, was a non responder, 0 antibodies, and have been calling around for the Moderna. They will give me a " booster" of Moderna. (Half the amount) OR I can have a full dose of Pfizer for my 3rd shot since it's what I originally received. I don't know which way to go...suggestions?

Oh...and the pharmacist said they are researching giving immunocompromised people a dose every 6 months. I don't know what to think about that.

Will check in on you all later. Gosh it's so good to have us all on here... I have missed speaking to you all. You just make everything seem better.

Clo

Hey all, feeling pretty crumby and in pain again. Will comment on everyone soon as I can muster the energy.

Ok... Going over to the other side to read NCOT post. NCOT, please stay on top of this.

Lab, Darn...I sure hope you feel better soon! Please keep in touch.

Stray dog...how are you?

It really stinks that we are all having issues. I love seeing everyone post but hate that we are struggling.

Let's see... I finally found a pharmacy to give me the Moderna. I had to fill out a ton of forms attesting that I received Pfizer, it didn't work, was immune compromised and willing to take Moderna even though everything is still being scrutinized and there have not been any long term studies and finally... That I agreed to let them collect information about me to be used for other immune compromised people. Yikes!!! Took the full dose 3rd shot Monday morning, did ok.... Sore arm, fatigue and headache... Thought it was getting better, but suddenly today I felt pretty iffy with little chills, took a nap and woke up with a sore throat and a fever. I thought after 24 hours I would not develop new symptoms.☹️ And now I have the tummy rumbles, had to take a zofran, and am thinking I might have to take something else. I have had to empty my bag 3 times in the last hour. But tI am not that I'll and these reactions.. that means it's doing something....so it's good.

Now I gotta find a turkey. Lol... Will check in with you all tomorrow.

You are all in my thoughts and prayers.

Minnie,

I wanted to let you know that I have missed seeing you here--although I was also happy to think that you were out there enjoying life.

I stopped posting here for awhile also. I was out doing my thing with a few ups and some really bad downs, but I had to work thru that time on my own. Lately I have been struggling and I came back. I just realized how very much I missed my old friends on HW.

I posted on your other post also. I just wanted to pop in here too and tell you I am sorry that you are going thru a tough time now. I hope things get better. Please keep us updated.

(((Hugs)))
Clo