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Need Advice Please :( 2 years 9 months ago #66355

  • Carcamoc10
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Groucho: I know, I was so hopeful I was finally going to stabilize :( hematologist mentioned that Tavalisse is in the back pocket for now and I have an appt this week to discuss the next steps after this crash!

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Need Advice Please :( 2 years 9 months ago #66356

  • GrouchoMarx
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I am not a doctor so I dont know what happened but thinking about it; if promacta worked for some time and then you crashed it; could it be due to the platelets production. Maybe promacta can't push your bones to produce more. Is it due to iron or other deficiencies? Just applying logic.

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Need Advice Please :( 2 years 9 months ago #66357

  • Carcamoc10
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Groucho: I’m thinking we’re probably going to stop the Promacta or try to taper off of it this week! And I’ve come to think that is a possibility because my crashes are VERY cyclical and they’re once a month. I used to think it was just because of the timing of the IVIG...but I hadn’t had any since early March so now my ITP is doing this all on its own :(

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Need Advice Please :( 2 years 9 months ago #66358

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Hope the mystery will be solved soon. Anyways try to work on your vitamins and minerals deficiencies at the same time you find your right treatment.
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Need Advice Please :( 2 years 9 months ago #66366

  • Hal9000
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Groucho: I know, I was so hopeful I was finally going to stabilize :( hematologist mentioned that Tavalisse is in the back pocket for now and I have an appt this week to discuss the next steps after this crash!

Carcamoc, there is such a thing as 'cyclic thrombocytopenia'. If the ITP has a specific amount of time between crashes, that sounds consistent. What seems odd to me though is that cyclic usually has normal, more treatable, counts outside the crash. Isn't yours more of the inverse? Counts are always down except for a week or so being elevated by Promacta? I dunno, just asking. If so, maybe your crash is just coincidental?

You are thinking you haven't been around anyone with the Flu, or that you've haven't had Flu like symptoms?

If you don't mind, can I pin you down on your steroid response? When you tried Pred? (with nothing else?) what dose were you given and how high did your counts go? How did it go?

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Need Advice Please :( 2 years 9 months ago #66367

  • b2h
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Hope you are feeling better now

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Need Advice Please :( 2 years 9 months ago #66371

  • Carcamoc10
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@ Hal: I’m going to get my hematologist’s thoughts on the possibility of cyclical ITP...because my counts when treated with IVIG and Promacta are pretty decent...but there always seems to be a decline and then a crash around the 3rd week post IVIG. I don’t remember the dose of prednisone used when I was first diagnosed, but I got up to 107K on it and then crashed when the taper began. So he hasn’t really bothered to have me on prednisone, which I’m fine with just because of those awful side effects! But to answer your question, I haven’t been around anyone with the flu or had any symptoms myself! In the past my crashes could be correlated to being sick or being around my sick daughter or husband, but this crash completely took me by surprise!

@b2h: I was discharged yesterday evening with a count of 21K so I’m much happier at home, but I’m a bit disappointed because IVIG usually raises my counts a lot higher than that! :(

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Need Advice Please :( 2 years 9 months ago #66374

  • Hal9000
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Ok. 107 sounds pretty strong. Just like with 'maria3132' son's recent out-of-the-blue drop, I'm wondering if this crash was Flu related somehow.

As you may know, only one person (so far) has reported good results with Tavalisse/Fostamatinib here and that is 'sachmo16'. He/She apparently responded to IVIG, but not steroids.
pdsa.org/discussion-group/search.html?searchuser=sachmo16&exactname=1&searchdate=all&order=dec&childforums=1

Have you thought about Nplate? It gives one access to higher platelet production stimulation levels. Higher doses of Promacta puts a burden on the liver. Or if your liver numbers are top notch, maybe just going up to 100mg of Promacta for awhile? Some here have done that. I suspect your doctor may not want that though, as he hasn't increased the dose already.

With your recent Rituxan treatments (which normally works for row 1), you may be more row 2 dominant than row 1 dominant right now - which would explain the recent reduced IVIG response. Rescues with both IVIG and steroids may be strong.

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Need Advice Please :( 2 years 9 months ago #66376

  • Carcamoc10
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@ Hal: They didn’t test me for the flu at the Hospital, possibly because when they asked me if I’ve had any of the symptoms, I said no..? I probably should’ve requested to be tested just to be safe, but I was kind of out of it because I was so sleepy lol! As far as the Tavalisse, I am happy to give it a go and see if that helps but I’m aware it hasn’t really worked for the people here that have tried it. And yes, my hemo does not want to raise the dosage of Promacta, he’d rather move on to something else and see if it works better...before the Tavalisse option he had mentioned our next option would be Nplate, but recently told me he’s a bit reluctant to try that because it ties me to the doctors office and it works very similarly to Promacta. I’m sure if nothing else works, he will try me out on Nplate and see how I do, though...

As far as the response with IVIG and steroids, I’m not sure anymore about whether it’s strong because they only gave me the pre-dose of steroids for the IVIG but then did not have me take any afterwards, which would explain why I only got up to 21K when usually I’ll get up to at least 70K after a round of IVIG!! I’ll ask my hemo why he thinks I only got up to 21K this time around...hopefully it’s not bad news because my insurance just approved IVIG for me at 100% and administered at home every 4 weeks, but it won’t do me much good if it won’t bring up my levels by much :/

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Need Advice Please :( 2 years 9 months ago #66377

  • JJ
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Sometimes drugs like IVIG lose their efficacy after a lot of use and simply stop working. That's why some people won't use IVIG as a regular drug and keep it for emergencies. It happens with other drugs in ITP too. You will often read people here say that one drug or another has stopped working and they have to move on to something else.

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Need Advice Please :( 2 years 9 months ago #66378

  • Carcamoc10
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@ JJ: that is what I was fearing, to be honest! And we didn’t even make the conscious decision to use that as a main treatment, I’ve just been crashing every month and have needed to use it as a rescue :( I guess the only good thing is if it’s not working for me anymore, there shouldn’t be a reason for my doctors office to send me to the hospital as often, unless I experience internal bleeding of some kind, of course!

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Need Advice Please :( 2 years 9 months ago #66379

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Glad to hear. Double digits are good. :)
It sounds like you have IVIg and are now figuring out what you can use as a long term treatment. I'm not sure why you were tapered off the prednisone when it was helping, but I'm not your doctor. I see no problem with staying with regular IVIg treatments while you figure out what else works for you. I've done that and I'm sure many others have as well.
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Need Advice Please :( 2 years 9 months ago #66381

  • Hal9000
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Carcamoc, I don't know what your background is but your logic is very good.

The 74 count happened for a reason. An unclear reason, but a reason non the less. Erratic rise and fall counts are consistent with row 2 folks and are inconsistent with row 4. I wonder if the 74 followed by a crash was because of Flu virus 'drifting', as opposed to 'shifting', as it evolves within the Flu season.

I think I would ask your doctor if he is aware that some folks go into remission while being treated with Promacta/Nplate alone. The percentage of the ITP population this is true is not small. Higher dose Nplate/Promacta should allow the test of that possibility. IMHO, although you may not get to a full/partial remission, getting back to 25 mg of Promacta is very real.

As for steroids with IVIG. Perhaps 'th8899' can chime in here and tell us how to get good results with both. Are a big dose of steroids given before the IVIG, or ? Are you out there my friend?

Oh wow. Periodic IVIG at home? Did not know insurance would do that for ITP. You know, some folks here in the US have been allowed to self administer Nplate at home. Not sure how that is happening as it used to be forbidden. Maybe a state insurance/law thing.

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Need Advice Please :( 2 years 9 months ago #66382

  • Carcamoc10
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Hal: my hematologist has called my ITP an “outlier” much to my dismay...it’s hard enough to get the ITP diagnosis but then to have it be refractory and resistant to treatments is a nightmare. I do believe the majority of the times I’ve crashed, it has been due to a virus of some sort...the time before this when my platelets were down to 15K and I refused to go to the hospital, my daughter had Strep Throat.

As far as the remission chances on Promacta, he had actually mentioned that later on I might not even need to take it anymore...although this was when I was first started on 25mg and my levels shot up to just below 300K...was cut back to 12.5mg and then crashed and have had to increase dosage to get just a bit of that first effect. And it hasn’t been working because I’m still on the roller coaster, so idk how we’d be able to mimic the circumstances to get that first response I had to it!

But yeah when I had the IVIG done at the hospital, I don’t think they told me the dosage of Solu-Medrol they gave me :/ But I was also surprised my insurance offered the treatments at home every 4 weeks for the rest of this year. I’m guessing my hematologist’s office sent them my labs and they were able to get it approved due to the monthly crashes..? Anyways, I have a bunch of questions for my hemo and I need to write them all down because I have an early appointment tomorrow to discuss our next step, wish me luck!!

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Need Advice Please :( 2 years 9 months ago #66385

  • th8899
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For my son, I found that IVIG plus 60 mg+ oral prednisone always brought his count into triple digits (I also found if you could start prednisone couple days before IVIG, then it will bring up count very quickly in a matter of 12-18 hours after IVIG infusion). Our hemo actually tried 20mg and 40mg prednisone along with IVIG, it had zero effect on his count (less than 10K). 60mg seems a magic number. No one can explain it. As for NPlate, we were also approved to admit at home by insurance (BCBS) and we are living in Maryland.
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Need Advice Please :( 2 years 9 months ago #66387

  • Hal9000
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Carcamoc, I know how you feel. I was batting low for awhile myself. Steroids: nothing, then IVIG: ok, and then Rituxan: nothing. It was the Rituxan fail that got me studying ITP intensely.

As for being an outlier, maybe a little. Most row 1&2 folks find 75mg Promacta as enough. In some sense, it is your doctors methodology that has made you an outlier. Normally one would try 75mg for awhile and then give up and immediately move on to Nplate. Once on Nplate, counts then rise at higher doses. The good part though is that you ending up taking Promacta along with Rituxan - which is very unique treatment and may be responsible for the 74.

On strep throat. A quick PDSA search looks like it is one of those unusual ailments whereby those ITPers who get it, can find their counts going up during that time.

On 25mg Promacta. There is a small fraction of row 1 folks that have found remission via Promacta/Nplate alone. With a 300 response, you may have been in that category, just as your doc was talking about. With any luck, the Rituxan that you took has corrected row 1 antibodies, at least for awhile, and all you suffer from is row 2 antibodies currently.

So what happens with a row 2 treatment response is that there is a gradual improvement in counts over time. The rate varies from person to person. The ride can be anywhere from smooth and calm to rough and intense, like someone turning on and off a light switch. The counts rising precipitates a corresponding reduction in Promacta/Nplate dose. The question in my mind is whether counts stop rising when you get to 25mg, or, will you go all the way to 0mg.

Thank you th8899. 60mg, wow that is a lot. Good to know! I guess that is about 1mg per kg of body weight. Ah, Nplate approved for home too.

Good luck with your appointment tomorrow Carcamoc.

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Need Advice Please :( 2 years 8 months ago #66390

  • Carcamoc10
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Hal: Wow, what was it that ended up helping you? Or are you still struggling with your counts?

Hematologist mentioned my ITP case again as being completely different from the rest of his ITP patients, I’m actually going to see another hematologist here in the Houston Medical Center just to get another mind on my case! This will be my second time seeing him, but I feel better having that second opinion to make sure my doctor is on the right track.

So the plan now according to my hematologist is: increase Promacta to 100mg a day...schedule IVIG preemptively the week of my menstrual cycle(around the time my crashes usually occur) and have labs done twice a week around the times of the month I bottom out, otherwise once a week until we can get me evened out. Hemo doesn’t want to move on to Tavalisse just yet. I had gone in a couple of days ago to do labs and was at 76K, so we’re feeling at peace for the time being :) I still had labs drawn today, so it’ll be interesting to see where those are at!

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Need Advice Please :( 2 years 8 months ago #66402

  • Hal9000
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Carcamoc, I'm really sensitive to Promacta. It's a row 3 thing. 12.5mg gives me a count in the lower 50s with extraordinarily little variation. Now on 75mg of Danazol since it is capable of remission. It works just as well but with more count variation. There seems to be a bit of an immune system on / off thing going on. I think when one can get reliable counts from Promacta/Nplate for a few months the stress of ITP fades away. One's life can get back to normal on them.

Up to 100mg of Promacta, yeah! Count is 76, yeah! Looks like things are switching around to your benefit. Ha, may not be on 100mg long. IMHO, may not want to reduce dose to target a 50 count. Row 2 folks seem to get better faster with a higher counts. May want to look up Promacta dosing rules/protocol and follow them.

Cheers to increasing counts!

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Need Advice Please :( 2 years 8 months ago #66407

  • Carcamoc10
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Hal: Wow, hematologist also mentioned Danazol as a backup should we need it, but I’d be worried about crazy side effects with that one!

And I actually am going to have to wait to start on the 100mg dose because my mail order pharmacy has to send me the 25mg pills to supplement my 75mg pills...I was actually very surprised because my labs yesterday showed I was up to 136K, which is a crazy jump in just a couple of days, but I’ll take it haha :) When I spoke to the medical center hemo, he mentioned he’s afraid we’re in this vicious IVIG cycle and he wants to try to break out of it, so he’s going to propose to my regular hemo if I can just have some rescue Prednisone to take for a few days when I usually crash...I have to be honest and say I much prefer that idea than having to do IVIG once a month!! Hopefully he would be on board and I was told if need be, I could get up to 150mg on Promacta to try to break out of the cyclical crashes...I really love how he thinks! And he’s far more laid back, he thinks anything above 30K is good and feels no need to panic with levels below 20K as long as there is no bleeding! Would it not be such a long drive, I’d switch over to his office, honestly lol!

But yes Hal, cheers to rising counts!!! :)

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Need Advice Please :( 2 years 8 months ago #66413

  • Hal9000
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When the doctor mentioned Danazol was that in the context of 'cyclic' ITP? AFAIK, that is the only drug which ameliorates cyclic. Normally, trying to compensate with Promacta/Nplate ends up causing sky rocketing counts outside the crash. That is, it takes too long to ramp up and then ramp down platelet production.

I can't remember. Were you having IVIG rescues during the 16 weeks of 75mg Promacta (and waiting on Rituxan)? If so, is 136 a typical IVIG rescue count while on 75mg?

Oh, 150mg of Promacta. I think that would be a first around here. I think some folks find that being on Promacta/Nplate can change symptoms when they crash. Those platelets that are around are super sticky and thus have fewer symptoms. I dunno myself. Count crashing doesn't seem to be a feature of those with a row 3 or 4 response.

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Need Advice Please :( 2 years 8 months ago #66417

  • Carcamoc10
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Hal: He didn’t make it seem like the Danazol was to specifically help with the cyclic ITP, but he might’ve made that connection when considering it because he had never mentioned that to me as an option before! But the way the Promacta works makes sense as to why it’s not helping monthly crashes...

And yes, I’ve been doing monthly IVIG for rescue since being diagnosed in December, actually...so naturally also through my Promacta and Rituxan run. And 136 is a pretty typical result after IVIG, I actually expect it to get a little higher, as I’ve gotten into the late 200s in the past!

As far as the Promacta, am I understanding correctly that it can intensify symptoms at low counts? I don’t like the way that sounds :( & obviously the hematologist mentioned we could get up to that dosage if need be, based on my age and general health...will also be checking liver enzymes every 4 weeks just to make sure there’s no damage there. I guess I am on board only because I do think I need to try something different to break out of this cycle we’ve gotten ourselves into with the IVIG!

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Need Advice Please :( 2 years 8 months ago #66420

  • johnmerrick
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i may sound like a broken record here but get to a hemo that specializes in ITP not somebody that just has knowledge and can treat it.
i did that and it made a world of difference. put the hard work into making that happen and you wouldn't regret it.
i emailed one of the top guys dealing in ITP told him my situation and he said come and see him i did and i am so glad i did.
the amount of thinking you are doing and research while i applaud it it's way beyond what you should be doing.
good luck to you.

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Need Advice Please :( 2 years 8 months ago #66421

  • MelA
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John I'm curious - do you live near the specialist you emailed then went to see?
Also you are in Canada? How long did it take you to get to see a hematologist to diagnose your ITP?

Hope all is going well for you!
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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Need Advice Please :( 2 years 8 months ago #66422

  • mrsb04
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Carcamoc10
John wrote the amount of thinking you are doing and research while i applaud it it's way beyond what you should be doing.
I believe people should play an active part in their their management plans. The more informed you are the more you can have discussions with doctors and make sure you are choosing what you feel are the right options for you. It is your body and you know it best.
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Need Advice Please :( 2 years 8 months ago #66425

  • Carcamoc10
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Mrsb04: I completely agree, I’ve actually had way more productive talks with my hematologist since joining this forum. While he can be overly cautious, he is also open minded and is open to suggestions from his peers and even myself, as I know my body more than they ever will at the end of the day! And funnily enough, I googled ITP specialists in Houston and both my hematologist and the one I see in the medical center came up! So I’m not sure where else I can look to come up with a who’s who in ITP here in Houston, google was very vague. Thank you for your input, though and John’s too as I’m sure he means well, but I’m already doing everything I can to get the best care I have available to me!
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Need Advice Please :( 2 years 8 months ago #66428

  • Hal9000
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... As far as the Promacta, am I understanding correctly that it can intensify symptoms at low counts? I don’t like the way that sounds :( ...

Other way around. A similar low count while being on Promacta can result in fewer symptoms. On rethinking the cause and effect: there are more 'micro' platelets around. Immune system destruction is not a perfect process so more total platelet destruction leads to more fragments of platelets / micro platelets in circulation.

... obviously the hematologist mentioned we could get up to that dosage if need be, based on my age and general health...

Sure I got that. You have low liver numbers because you don't drink a lot.

Based on past IVIG treatments, and not that you are / will be taking more Promacta, what do you expect your next count will be? Higher, lower, or about the same?

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Need Advice Please :( 2 years 8 months ago #66431

  • Carcamoc10
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Hal: ahh ok, that’s good, you scared me haha...and I didn’t know about the micro platelet thing!! Wow. That’s interesting, are those fragments and micro platelets able to help the blood clot even though they’re not normal platelets?

And I’m expecting my counts to be up this week...based off of my past IVIG treatments. I did start the 100mg of Promacta on Sunday, but I know sometimes it takes some time to kick in. I’ve been wrong before, but I’ll be really surprised if I’m not in the 200s this week!

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Need Advice Please :( 2 years 8 months ago #66440

  • Hal9000
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Yes, I think that is the case.
I guess the correct terminology is 'platelet microparticles'. Here is a post by Sandi on the subject.
pdsa.org/discussion-group/13-general-discussion-for-parents/30161-preventing-ich-urine-analysis.html#64415
If one does a PDSA search on 'microparticles' one can find more.

Ok. So if counts are in the 200s this week it will be next week before there is a real indication of how well 100mg is helping?

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Need Advice Please :( 2 years 8 months ago #66441

  • Carcamoc10
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Hal, I’m assuming so. I was also informed recently that both hemo’s are hoping the 100mg dose will prevent my monthly crash, which we expect in a few weeks!! I still have to ask my regular hemo if he plans to prescribe me any prednisone to take in case I start to see symptoms around that time...as brought up by my second opinion hemo in order to avoid IVIG this month! We’ll see, I still have weekly labs on Thursdays and an upcoming appointment in a couple of weeks...

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Need Advice Please :( 2 years 8 months ago #66455

  • Hal9000
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Yes, absolutely with the 100mg dose.
On the Prednisone. I've never seen one but others here have talked about a 'steroid dosing pack'. It contains a variety of doses which are ideal for taking Pred for just a few days. Maybe this is it:
www.drugs.com/mtm/methylprednisolone-dose-pack.html
Have you heard of this before?

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