Pred taper and Rowasa questions

Hi all! Been on 40mg of pred since Friday. The GI and his NP want me to taper 5mg every Friday. Does that seem too fast? I was in a pretty bad flare that regular and rectal meds could not get me out of. Just wanted to get your opinion!

Also and let me preface this by saying I am in NO hurry to taper the Rowasa. I have been using it nightly for about 7 weeks. At what point would I go to every other night. I don't want to rush anything and end up flaring again.

Symptom wise since I started the 40 mg of pred....no more D, going twice a day. Urgency greatly decreased. No mucous. First bm still has bright red blood.

At first I thought I was going to avoid some of the pred side effects. Ugh....night sweats started immediately. Afternoon shakes and brain fog started yesterday. Occasionally have racing heart. Opps...that wasn't a question but a pred vent!

Thanks all and Happy Thanksgiving!

I've been told by my doctor not to taper Pred until I check in and make sure I am in great shape. So there's no schedule to taper -- it's based on how I feel.

Also, Rowasa is a maintenance drug, so there wouldn't be a need to taper and I would think there would be a good reason to continue it to keep you feeling well once the pred does its job.

If the Pred is making you crazy with side effects, though, it might be good to lower the dose a little. I just did that with my doctor's advice and I feel a lot less crazy!

Usually the starting dose should be tapered after 2 weeks down my 5mg and then each week thereafter. Tapering after 1 week seems too soon....

I would think the Dr would want you on the full dose of pred until the bleeding also stopped.... but it's great that your other symptoms have improved!

As everyone else has said, I, too, would stay on the Rowasa every night until well after off the pred, probably 4-6 weeks after, and then, if there are no symptoms, start to go to every other night. The Rowasa is so safe and perhaps even beneficial, so there's not the hurry to get off it.

No, maintenance shouldn't be at nightly...if one starts bleeding after tapering to every second night...fragility is an issue, so one is still "flaring".

If one has to maintain on a nightly dosage, I would think that tapering or lowering the dosage to 2 grams would be much better than staying at 4g.  At least for a period of time to see if that might be part of the issue.  As well...maintaining at a high dosage might very well lead to other symptoms related to high liver or kidney enzymes or an eventual allergy/intolerance to salicylates in general.

What's the whole point to what I'm saying? I've never agreed that nightly would be a maintenance dosage...ever. My point is that one may need a very long time nightly to treat and for the mucosal layer to finally stop reacting, repair or heal...regarding bleeding. If one has a very stubborn small area, nightly might be needed...but that area may never heal and may need a boost of a steroid enema.

If one stays at a nightly dosage as "maintenance", and then flares after a long period of quiescence or up and down symptoms, it's not working any longer and another med treatment would have to be kicked up a notch.

Remember that there can also be other issues happening...one would hope that stool samples, c-scope or whatever else testing would be done to determine possible culprits. If all is clear regarding that, then the focus will probably still remain that 5ASA isn't working any longer.

The longest I used the enemas nightly was around 4 months. I'm sure my doc would have agreed longer if necessary....but he wouldn't just say OK, you need them nightly forever...he would still STRONGLY encourage me to lower the dosage.

Again, my point.....get to a low enough dosage where if one needs treatment, one can increase.

It is possible that a constant high dosage of 5ASA could cause adverse effects where it's causing or exacerbating symptoms rather than helping them. One can keep taking the med, but it's not helping.

Again, another plus for trying the tapering method or a lower dosage amount to the 2g...sometimes too much is too much.

I don't think you have the experience as of yet regarding what the enemas can fully do for you...but you have about pred. I bet you'll reconsider if pred's brought up as a suggestion for you next time.

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