The covid vaccine

[Simon Dog]

I am also on Prednisone free, but take mycophenolate and tacro.   The case I referred to was someone on 5mg prednisone only.

[iolaire]

My nephrologist said the studies do show better results for prednisone based treatment so there is no reason to remove it if I didn’t have side effects etc. and with my history of lupus it’s safer to stay on 5 mg.

[Simon Dog]

I have a specific reason to avoid prednisone (prednisone induced avascular necrosis) but what is interesting is that the prednisone free protocol is standard at the shop I used.  Weaned from it before leaving the hospital, finally settled in at 250mg mycophenolate daily and 1mg tacro twice a day, no signs of rejection.

[PrimeTimer]

Anyone have an opinion or experience with the Johnson & Johnson vaccine? Apparently it is a one-time jab. I have attempted twice now to taper down/wean off my meds as my doctor instructed me before being vaccinated but, it ends in disaster and I have to go right back to my usual dosing.

Since my husband has passed away I am having to move in with my brother and his family in another state. They have since all been vaccinated. Every time I taper down tho, I start coughing and choking and my O2 level drops like a rock. I am alone right now and having to exert myself with sorting thru stuff and clean and pack. Cannot do it if I can't breath. So now I am thinking of getting vaccinated after I move, when I can mostly rest and not be exerting myself (thus hoping to avoid the breathing problems and O2 drops). But my SIL would like me to look into getting the one-time jab offered by J&J. However, I am a bit concerned about that because they say some people have ended up with Guillain-Barre' Syndrome from the J&J vaccine. I've enough problems as it is. I do not need anymore. So, I am just wondering if I am doing the right thing by passing on the J & J vaccine. I am not opposed to getting vaccinated, just not really wanting the J & J and as for the others (Pfizer or Moderna) I do think I need to wait until I know that I won't be exerting myself.     

So, anyone have experience or an opinion on the one-time jab with Johnson & Johnson? Maybe I ought to just go with any of the vaccines, whether I am still on Prednisone or not. There's nothing worse than the loss of my husband so at this point, I've got nothing to lose from trying any of the vaccines.   

[kristina]

I have a specific reason to avoid prednisone (prednisone induced avascular necrosis) but what is interesting is that the prednisone free protocol is standard at the shop I used.  Weaned from it before leaving the hospital, finally settled in at 250mg mycophenolate daily and 1mg tacro twice a day, no signs of rejection.

Hello Simon, I am also on Mycophenolate and Tacro, different dosages, but same medicine ... Do you notice any side-effects ?
P.S. I have not been informed about another Pfizer-vaccination after the two one's I had earlier this year ...

Hello Iolaire, hopefully you are continuing to do well on your Prednisone-prescription for Lupus ... I have only tried Prednisone once - many years ago -  but it was discontinued after one week because of an allergy, which was causing me severe side-effects...

Best good-luck-wishes from Kristina.

[Simon Dog]

I have loose stools, but I think that is a side effect of a different med.  I had some tingling in the palm of my right hand when first on Tacro, but that went away.  They started me on 1000mg Mycophenolate twice daily and 4mg of Tacro twice daily upon discharge, but tapered that down rather quickly.   Myco was lowered becuase I had low WBC at the time, but that has been mostly resolved but they kept the dose since it working for me.

3rd dose vaccine comes from an MD who reads the current medical papers; balanaces risk vs. reward; and thinks it is a good idea.  He does not blindly follow "recommendations" as they are waiting for "proof it is effective" rather than evidence of "negligible downside risk".  It will be interesting to see if he orders a 3rd does or if just show up and STFU.

[kristina]

Many thanks Simon for your kind thoughts and information, I do appreciate it very much and it creates for us a fair chance to compare notes about our medicines and side-effects etc. Perhaps this here might not be the perfect topic to mention our anti-rejection-medications, but I am so happy for us to exchange our notes and perhaps some other "transplants" might join in as well?

I also wonder whether specialists "measure" the amount of anti-rejection-meds according to our body-measurements like weight and height etc.? Or perhaps doctors work-out different anti-rejection-medicine-"regimes" in different countries?

For example, at breakfast (~ 7.30am) I take every day 5mg anti-hypertensives plus 30mg Cinacalcet.

Then, from 8am onwards there is no food to be taken at all, in order to give the 10am-meds the best possible chance to "do their anti-rejection-job" properly and at their very best.

Precisely at 10 am I take my first daily dosage of Tacrolimus, which is 2 x 1 mg capsules and nothing is to be eaten for the next two hours either.

Precisely two hours later at ~ 12pm I can prepare and eat some lunch, but never ever before 12pm.

Then again, from 8 pm onwards, there is no food at all to be taken, in order to give the 10pm-meds the best possible chance and continue doing " their anti-rejection-job" properly.

At 10pm I take my second dosage of Tacrolimus, again 2 x 1 mg capsules plus 1 capsule of 250 mg Mycophenolate.

I was told that it is most important to be absolutely precise in terms of time, never miss a dosage and to make absolutely sure that from 8 am and 8 pm there is no food at all to be taken for at least two hours. I also found out that if I ever would become a bit easy going (laissez faire) about the time etc., it would have devastating results.

These very "tight measures" might at first come-over as extremely "regimented", but the good news is, that the body and survival-instinct get very quickly used to it and the more precise "one" goes about it, the easier it is for the body to take these heavy medicines and it is also better in the "long run" because it keeps the transplanted kidney "as sweet as possible", and an easy-go-lucky-attitude (laissez-faire) could really have very quickly devastating results. My usually very artistic mind adapted to it all surprisingly quickly and by now I have a pretty good idea, without looking at the time, whenever it is time for my anti-rejection-medicines to be taken.

I also found by chance some lovely little pill-boxes for home and also for the handbag etc. on Amazon etc. and these lovely little pill-boxes look very beautiful and psychologically very "inviting" and lovely and their beauty assists me psychologically, to adhere to this "regimented" system of pill-taking in a positive way and with a much better attitude.

Good luck and all the best from Kristina.

P.S. I just wonder whether my detailed explanation about my anti-rejection-transplant-medication etc. and when to take it etc. etc. might perhaps have been mentioned at the "wrong" topic and should perhaps be at the Kidney-Transplant-Section instead ? What do you think?

[iolaire]

I was told that it is most important to be absolutely precise in terms of time, never miss a dosage and to make absolutely sure that from 8 am and 8 pm there is no food at all to be taken for at least two hours. I also found out that if I ever would become a bit easy going (laissez faire) about the time etc., it would have devastating results.

Did they allow you to pick your times?  I was told to be consistent but have picked my own times, currently 4 am/4 pm so as to have minimal impact on my eating schedule.  Pre covid it was 5 am/5 pm as I returned home from work later.  I set an alarm for the early morning pills and go back to sleep afterwards.

[kristina]

I was told that it is most important to be absolutely precise in terms of time, never miss a dosage and to make absolutely sure that from 8 am and 8 pm there is no food at all to be taken for at least two hours. I also found out that if I ever would become a bit easy going (laissez faire) about the time etc., it would have devastating results.

Did they allow you to pick your times?  I was told to be consistent but have picked my own times, currently 4 am/4 pm so as to have minimal impact on my eating schedule.  Pre covid it was 5 am/5 pm as I returned home from work later.  I set an alarm for the early morning pills and go back to sleep afterwards.

Hello again Iolaire, and no, "they" did not advise me to "pick" my own times at all. I was told straight after the transplant, that these times (10 am & 10 pm) were particularly kind/gentle times for my body to take-on these "heavy" anti-rejection-medications and so far (touch wood !!!) I have not had side-effects. Please ask your specialist about it ... just to make sure ...
Best wishes and good luck from Kristina.

P.S. Just out of interest: How did your specialist/s advise you about the timing of taking your anti-rejection-medication etc.? Do you take any other medication as well and does it "clash" as a result of "induced" drug-intolerance, due to "clashes" of medications?
Do all transplant-patients at your Transplant-Clinic take their anti-rejection-medication at the same time?
Are there different dosages of anti-rejection-medications for different patients etc. to take, according to a particular specialist or do all patients in your Clinic all take the same "sort" of anti-rejection-medication?
Is there any communication and perhaps an exchange of experiences etc. taking place at your Transplant-Clinic?

Many thanks again for answering my questions and kind regards from Kristina.

[iolaire]

P.S. Just out of interest: How did your specialist/s advise you about the timing of taking your anti-rejection-medication etc.? Do you take any other medication as well and does it "clash" as a result of "induced" drug-intolerance, due to "clashes" of medications?
Do all transplant-patients at your Transplant-Clinic take their anti-rejection-medication at the same time?
Are there different dosages of anti-rejection-medications for different patients etc. to take, according to a particular specialist or do all patients in your Clinic all take the same "sort" of anti-rejection-medication?
Is there any communication and perhaps an exchange of experiences etc. taking place at your Transplant-Clinic?

Many thanks again for answering my questions and kind regards from Kristina.

I don't recall them mandating specific times.  I have two classes of medications, the transplant drugs' twice per day 12 hours apart and then medications which need to be taken with food.  Obviously those don't overlap due to the no food two hours before and one hour after.  After I was transplanted they tried to get a a support group going but the times didn't work out and the one or two times I showed up no one was there. 

I don't recall them having reservations with the medication times changing due to time zones, I know for a fact that I mentioned I thought the levels were slightly off due to getting labs after a trip before I settled back into my time home time zone and they (my transplant/personal nephrologist and his assistant) didn't express concern.  I'm interested in hearing other peoples recollection on this.

[UkrainianTracksuit]

My own recollection here...

No, I don't recall any mandated times being advised for efficacy of any medicine. My transplant outpatient booklet offered the tidbit that tx meds be taken at a time patients will remember and it becomes part of the daily schedule. And then, the advice that the meds should be taken every 12 hours. In the section about travel, it stated that patients could move to a time that suits their time zone (such as if it is 7 am in Hong Kong and you like 7 am, use that time for the duration of your trip) OR keep the same time that it was taken domestically, just with the time difference factored in.

The tx floor at the hospital handed out the medications around 8 AM along with breakfast delivery. So, I just adopted the 8 AM and 8 PM (when they handed out the tac dose) times because it worked, it was easy.

And a key point there: breakfast delivery. I've always taken my tx meds with food. Besides the lithograph in the package of Myfortic, no one brought this up to me to have it on an empty stomach 2 hours pre and then 2 hours post. I had the tx-surgeon fellow and tx nephrologists (they weren't following me, so they just came to ask how I was doing, had access to my numbers, said everything looked great, moved on) come into the hospital room during breakfast, with my cereal made in the bowl, and they didn't have an "Egads! what are you doing?!" moment. Not to jinx myself, but my eGFR hasn't dipped below 90% with this regimen, no signs of rejection, and everyone is happy with my progress, so it hasn't been a problem. Not that I eat a heavy breakfast anyway...

Now, for the most part, like 98% of the time, I take everything on time, but there have been times I've been late. Once, like 3.5 hours late - not my fault, just the medical system, and "I'm a tx patient and my medication is due" doesn't move you up in the line - perhaps just at emergency.  Nothing happened. Another time, I was late, so that meant I definitely went over the half-life of Advagraf, but I was advised it's better to let a stomach settle than vomit it up, retry it, vomit and then hit up the ER. As long as it's in a 4 hr window. OBVIOUSLY take all medications on time, not saying otherwise, but I've been late and still have two new organs continuing to work extremely well. It's more if it becomes a pattern, an everyday thing.

I take one pill (unrelated to tx) as soon as I get up in the morning. An hour after that, I have coffee and whatever. Then my tx meds shortly after. My morning meds are only tx (myco, tac, aspirin, and Septra 3x/wk). Then, myco in the evening. Later, right before bedtime, I pop my tachycardia/"stroke prevention" stuff. I have low blood pressure, so the -prolololololol (trying to be funny there) med is a very low dose.

[iolaire]

Thanks it’s interesting how all of us have unique instructions that are probably center specific. My Envarsus XR (am) and Mycophenolic (am/pm) tablets both have stickers on them saying take on an empty stomach 1 hour before meals or 2-3 hours after a meal unless otherwise directed by your doctor. I’ve been told the meal thing mostly relates to fat as the medicine can bond to fat molecules.

[UkrainianTracksuit]

* I want to correct the word lithograph with monograph. That mistake (I knew I made it right after  ) niggled at me all night.

Yes, indeed, it is very interesting.

On my box of Myfortic, I have the stickers that say:
"Prolonged or excessive exposure to direct and or any artificial sunlight SHOULD BE AVOIDED while taking this medication."

"SWALLOW WHOLE Do not crush or chew."

"PREGNANCY WARNING. If you are pregnant or considering becoming pregnant you should discuss the use of this medication with your doctor or pharmacist."

My understanding about food is consistency, such as if you take it with food, always take it with food.  You're right in that it seems to be center specific. For instance, this info from British Columbia is on the "always take with food to prevent stomach upset" mantra. http://www.transplant.bc.ca/transplant-and-medications/anti-rejection-medication/mycophenolate

[Simon Dog]

My MD told me that food with Tacro can reduce absorption by up to 50%.  Also do not take Mycophenolate at the same time as magnesium supplements.

My tacro and mycophenolate both come with "Hazardous Drug" stickers on the bottle and my wife (RN) is told to wear gloves when administering such drugs.

[kristina]

My MD told me that food with Tacro can reduce absorption by up to 50%.  Also do not take Mycophenolate at the same time as magnesium supplements.

Here the transplant-surgeons talked on similar lines and because of my very small med-dosage, my breakfast takes place from 7am-8am and from then on there is no food to be taken until after 12pm, because of the 10am anti-rejection-meds and, then again supper takes place until 8pm precisely and from then on there is no food to be taken until next morning because of the 10pm anti-rejection-meds. Fortunately so far it has worked for me and hopefully it continues like that ...
Good wishes and best of luck from Kristina.

[SooMK]

I take my meds at 9am and 9pm. Always with food. I've made only a few mistakes in 7+ years. I started off fanatical about taking my meds on time. Now I stay within a half hour. I lost my high anxiety when, on multiple occasions, I sat waiting at the clinic for my labs to be drawn so I could take my meds. If it was really as important as I'd been led to believe, I wouldn't be left waiting so long. I was taught at the hospital to ladder up and down my meds by a half hour each time if I need to change the time. The clinic is over 2 hours away so I have to make an 11am appointment. I start 2 days beforehand moving the time later in the day and then back the other direction after my appointment day.

Kristina--the way you take your meds is the way I thought post-transplant medication would be. But after the first year, it's been pretty minimal for me. I have the pill box set up each week and I have an alert on my phone that I depend on. If I'm going out I will take my other meds before I leave and carry my transplant meds in a tiny plastic bag to take at the appropriate time. There's only 2 these days--1 mg tac and 360 mg Myfortic, twice a day.

[Riki]

When my mom called for her appointment, she asked if, since I am a dialysis patient, if I could get my shot at the same time.  After asking a few people, the answer came back as no.  I was eligible to call and make my own appointment a week later.  She got hers on May 4 and I got mine on May 12.  Why they couldn't have done us at the same time, I've no idea.  Now we are just waiting to hear about our second appointments.  We got different vaccines, so we can't have our second doses at the same time either.

Hiya, Riki!  It's great to "see" you!  I hope you and your mom get your second shots soon.

Mom got her second dose (Moderna) on July 10, and I got mine (Pfizer) on July 16.  We got our PEI Pass so we can leave the province and come back without self isolating, and I'm waiting on the border to open so that I can visit with my friend Kelly in Washington DC the first week of October.

My lil bro got his first on July 8, his birthday.  He had to wait a bit to get it because he was getting his transplant workup done and he had to get a bunch of other vaccines first.  They seem to be waiting 12 weeks between doses here, so he'll probably get his second in September or October.