Respiratory Infection again

[pennstater]

I started a new respiratory infection again 6/1, two trips to ER and now on longer taper of higher dosage prednisone. Airways extremely irritated still. At least a month to taper. Then waiting period for Ty infusion. Once clear, going to get pulmonary function testing.

I can't believe I am wondering if Ty is worth it. I haven't had new lesions, but also have not had any disappear. All the cervical and brain lesions are like they were before Ty. I just can't stand getting sick all the time, but not sure I want to risk going off Ty. So frustrated.

[dyin_myelin]

I can't believe I am wondering if Ty is worth it. I haven't had new lesions, but also have not had any disappear. All the cervical and brain lesions are like they were before Ty. I just can't stand getting sick all the time, but not sure I want to risk going off Ty. So frustrated.

Hi Pennstater,

Have you tried pushing out the infusion? I know that you feel cruddy before the next one, but pushing out helped to clear URIs for me. I've very envious of your JC status. If you test negative three times your odds of seroconverting are very low.

I just agonize over things so much, I wonder if I should switch. I know I'm the type of person to look at MRIs of PML lesions until 3 AM. Like you though I don't want to rebound or get worse. My neuro wants me to switch to tec so I can worry over stomach cancer rather than PML. I hope you feel better soon, none of these choices are easy. : (

[KatieAgain]

Kathy-I just had Number #10 today.

I am a walking advertisement for this drug. Three lesions have disappeared, three points off the EDSS and I am still JCV-.

But there has been a price to pay. I too am experiencing issues. I had the break through flare. I have Anemia most likely from the TY...and I am finding out Anemia is no fun. They are monitoring it like crazy and I have to drink iron every other day. I am still experiencing symptoms.

Today I found out I once again have ulcers and have to go through a complete Gastro work-up. I break out like a pre-pubescent teen and I have had depression since the Hospital incident.

And the worst...my veins seem to not be cooperating. Eight sticks today. They are talking about a Port. I do not want a Port. I almost passed out when they explained the procedure to me.

So...what's worse all these issues or MS? For me it's MS. I will continue with the TY. This has been just short of a cure for me...but I am being worn thin with every thing else. So I understand where you are coming from.

I can not go on Tecfidera because of the stomach issues at this time. Have you thought of going on Tecfidera for awhile to see how it works? You could come back to TY. Think of it as a TYcation.

[pennstater]

dyin - thanks. I will discuss with neuro at next office visit. I am on#24. I never heard that if you tested negative 3 times,,most likely won't test positive. I have tested negative 4 times, die for test now. Not sure why, but neuro said if I had to switch down the road, he was leaning toward aubagio. Good luck with your decision.

Katie - I feel like such a weenie when I read everyone else's posts and their effort to stay on Ty. From an MS standpoint, it is doing its job. Slowed progression, but I didn't get the recovery some people do. It was pretty uneventful until I hit #18. I have had 4 respiratory infections,1 sinus infection, and UTI since. I know deep down, feeling like crap from infections is better alternative to feeling like crap from MS.

I hope they can get your anemia under control. I know Ty has been a new lifeline for you. I will wait to see what pulmonary function testing shows and see if compromised, maybe take Ty break.


Thanks for letting me whine!

[22cyclist]

KatieAgain: I have a port due to bad veins. The procedure itself is no big deal, they give you Versed so you forget the whole thing. For mine they couldn't get a peripheral line to even give me drugs for the procedure so they had to access my IJ while I was awake. That did hurt, but as soon as they go in there they knocked me out, and I remember nothing. The port itself does not hurt. Feels kind of like an alien under my skin, but I am super skinny so it sticks out.

Accessing it does not hurt and it is quick, way better than looking around for a vein in your arms. I have had mine for 2 years with no problems. Hope you will consider it.

As far as infections go, I get many GI viruses and colds. I have to wear a mask when I go to the hospital to remind myself not to touch my face after touching things in the IV room or door handles. I wash my hands with soap and water, not that alcohol stuff. That has made things better for me. Of course I don't go out for work, but places like the grocery, I wear a mask just to be careful.

You have to become sort of OCD to avoid infections with Ty.

I also have anemia and low platelet counts. The anemia sucks because it is hard to breathe just doing normal stuff.

Hope everybody feels better soon. I have had break through relapses, but no new lesions. So, I am going to hang in there with it. Its the best DMT I have been on.

Take care
Lisa

[KatieAgain]

Kathy-You are in no way a weenie. I currently don't have any major MS stuff going on and I am an emotional mess over the non-MS stuff. Like the Anemia and a port. Hmmmm...OK...maybe we both are weenies...that's my new word "weenie". . But who cares? I told the oncologist that does my TY that it should be illegal for anyone with MS to get anything else. Absolutely unauthorized.

Lisa-Thanks for the info on the port. I can't say it would be a deal breaker when it comes to TY...because I will indeed probably get one if required...but it absolutely grosses me out.

During wartime, I was a Casualty Officer. Not much that I have not seen. But when it comes to me, myself and I...all three of us want to pass out when the word port is mentioned. Serious vasovagal response here. Hello, floor! I guess that makes me a Warrior Weenie.

Yes...anemia does indeed suck. Nothing pleasant about it...can't recommend it. MS is worse though.

[pennstater]

So I had one missed infusion, finally finished prednisone today, but still have cough. Was hoping to get infusion next week, which would be 8 weeks since last one. Neuro wants me to wait one more week, but we are away that following week. So it will be 10 weeks.

I really started to feel it this week, my arms are really starting to ache and feel like they weigh 100 pounds each. I guess the big question is if more symptoms worsen and/or appear, flare or Ty withdrawal?

I guess I will calling neuro to find out. I don't want to be on vacation and have relapse. Between steroids, Ty missed appt, which isrssimg with hormones, this weenie is pissed about MS. Think tonight I will let myself have pity party and get it over with.

Thanks for letting me share my pity party.

[pennstater]

Neuro changed mind on Friday after discussing issues. Infusion.
site had a cancellation for tomorrow. I can't wait

[KatieAgain]

Neuro changed mind on Friday after discussing issues. Infusion.
site had a cancellation for tomorrow. I can't wait

Yes! Finally. M Houston, we have lift off!

Hope things return to normal very soon for you.

[lindaincolorado]

Hi Kathy,
many years ago my bio-chemist son told me to take vitamins (especially C and E) to keep up my immune system. I said, but it's my immune system fighting me. He said different components to it. When others have colds, flu, infections (thank G-d) I have stayed healthy. I will start my 9th year on Ty in Sept

Just wanted to toss this out there

[pennstater]

Thanks Linda for the tip on Vit C and E. I will have to explore again.

Lisa - I nay need to become OCD as well. I hope I am wrong, but feel like another resp. infection is coming on. My niece was over with her 4 month old who had a cold. I didn't hold the baby, kiss anyone, or touch hands. Thought I was thorough and careful. Mask, here I come. Any chance they come in different colors so I can match to outfits

Katie - Liked the "warrior weenie". Hope the port is not needed.

Infusion helped a lot. Feel like getting back to baseline finally.

[buster]

Ty is worth it!

I just finished infusion number 53 . Ty has been great for me. In the past 4 yrs, i just had my first exacerbation requiring IV steroids, although I think I could have used them last yr. ( that is another story involving a stupid NP). I was on betaseron prior to TY and needed steroids every 10 months. My MRI has improved, they can't see 2 of my lesions anymore. I can definitely tell the difference when I am a week to 10 days before my infusion, I get fatigued much more easily. Yes getting a monthly IV is a pain, I am a hard stick, but it is much better than every other day shots. I dread the day I have to change drugs, but am glad to know the next one will be oral. For those of you worrying about PML to me the risk is worth it. I am JVC negative & am part of a study...I have one more blood draw before I complete it. Hang in there

[ru4cats]

buster,

You have my curiosity up. What study are you in and what is its purpose? I just had infusion 54, and am also JC negative (8 tests). All of my brain scans (6) are unchanged: no new lesions, no active lesions.
I'm very lucky; I'm an easy stick, although a new nurse is trying to turn me into a pin cushion as she learns. But what the hay, I'm willing to help out those in need .

[pennstater]

Here we go again. Vitamin C and E?

Once again, another infection. We were out of the country when this started and had to fly back Friday with this in full swing. Longest and most painful flight in my life.

Linda - how much vitamin C and E do you take? I take a multi vitamin and eat lots of fruit and veggies spanning the colors. I can't seem to break cycle. Have Dr appt tomorrow and see neuro at end of month for 4 month checkup, so will discuss with him. Thanks for any help.

[lindaincolorado]

Hey Kathy, I take 500C and 400 E daily. If I feel a cold coming on I up the C to 2000 starting with 1000 and then 500 2 more times that day. I will do this for approx 3 days. I do not take more E.

I am so sorry this is happening to you

Linda