Prendisone side effects / Rituxen

[PattyL]

I have been on prendisone for 4 mos.Started 40mg now tapered to 20mg as I started rituxen just had my second infusion Dr may taper again on the Aug 20th visit to 15mg. Seems like I have just as many side effects on the lower dose, now I am having trouble remembering things at times, does anyone else have this problem? I understand it could take about 6 weeks for Rituxen to take affect. I'm hoping this will get me into remission. What has been your experience?

Thank you,
PattyL

[Birdie]

Seems like I have just as many side effects on the lower dose, now I am having trouble remembering things at times, does anyone else have this problem?

What has been your experience?


My experience is:

1) You can blame prednisone for earthquakes so don't be surprised about side effects, just make sure to discuss with your doctors.

2) Don't ignore any new or sudden symptoms.

3) Contact your doctor immediately for anything extreme or scary.

I had major prednisone induced eye problems after a couple months of 80mg but many other symptoms seemed even worse at the time. And hey, don't be in too big of a hurry to get off it, don't expect too much too soon and be disappointed. When reducing it may be far better to go slow.

[morningsunshine]

Hi there!

I am also in RTX-induced remission, using RTX and prednisone (my last four infusions were in April). I've noticed in the last few weeks that my thinking is not as clear as it normally is. In particular, I've been misspelling words, and things like finding files and writing emails at work are happening at a slower pace than normal.

I haven't seen this as a side effect of RTX or Prednisone, but I am definitely experience some sort of mental deficiencies, and I suspect it's one of the two! Let me know if you have any more specific symptoms or if you figure out what is causing them.

Also:

I was on 20mg/week of MTX last year and noticed significant brain fog then--it was very noticeable when I finally got off the MTX and could suddenly think clearer. I feel like that brain fog has set in again, even though I'm not on MTX anymore.

[vdub]

I don't think you can blame the pred for that. Of course, you never know for sure, but I think it would be very unlikely.

[drz]

Brain fog or chemobrain can result from various meds. Usually it clears up when you stop the drug or drugs causing it but sometimes the effects linger on for a long time. Of course certain drugs, usually those often used for street use and abuse, can cause permanent changes in brain functioning. A good neuropsychological evaluation can assess your cognitive functioning and neurological exam can identify any problems that need to be addressed. It is rare but sometimes physical problems do impact our brain eg tumors, Wegs can attack it, strokes, and other things that require our attention. Like our departed guru Jack often said, just because you have Wegs doesn't mean you can have something else too. Of course we know that Wegs can cause many different problems and should always be a suspect but not the only thing to evaluate.

[Pierre42]

Mood and Cognitive Changes During Systemic Corticosteroid Therapy (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC181154/)

"... particularly deficits in verbal or declarative memory."
"... poor concentration ..."
"Even severe cognitive impairment consistent with dementia or delirium has been reported"
"... who developed significant and widespread reversible cognitive function deficits, including attention, concentration, and verbal memory, while taking 20 to 100 mg of prednisone daily."

Yes, prednisone is a spectacularly evil nasty toxic drug with a wide range of unpleasant side-effects, however the alternative (ie not taking prednisone) is .... permanent.

Pierre(The GoogleFU is strong with this one)42

[PattyL]

Hi,

I am pretty sure this is caused from prednisone I am experiencing the same things. I just had my last infususion of RTX I had the brain fog before the RTX I am now being tapered from prend. was at 40 now down to 15 hope this will help. I have not felt the benefits of RTX yet I understand it will take about 6 to 8 weeks.

[MaxD]

As others have said, prednisone can cause some (reversible) memory loss, among a whole host of other side effects. Rituxan will take few months to bring you into remission. Almost all the side effects you notice will be from the prednisone, and will become noticeably worse when you taper down to a low level. At that point even though you will be in remission, you may feel miserable from prednisone withdrawal. Eventually you will recover from withdrawal symptoms but give it time (a few months).

Good luck!

[Pete]

Hi Patty,

When you taper off pred, do it very slowly. Otherwise, you may experience more severe withdrawal symptoms.

When I got down to 15 mg, my taper was -2.5 mg/month down to 10 mg. From there, it was -1 mg/month down to where I noticed disease symptoms returning (3 mg in my case). I went back up to 5 mg and called my rheumy. She put me on four weekly rtx infusions and took me off mtx. I finish this round of rtx on Thursday. I'll stay on 5 mg/day of pred until I see my rheumy again in early November.

Other than some sleeplessness caused by solumedrol (steroid given with rtx), slight fatigue the day following each infusion, and an episode of heartburn (calmed with peptobismol), I feel great.

[WG mom]

I wish it only took 6-8 weeks for rtx to bring about remission. My daughter has had 3 infusions, two of them 6 months apart and this last one in May. For that, the doc did one mega infusion instead of the traditional once a week for 4 weeks. Still not in remission. Another one shot mega dose is scheduled forcOctober and she was told she would likely need one more in January to
reach remission. Prednisone has been decreased to 10 mg now for about 6 months. When she tries to get lower dosages, the headaches are too severe.
So, is it true rtx is usually effective in just 4-6 weeks because if that's the case, not sure why it's taking so much longer for my daughter. Thankfully, thus far, inflammation has remained localized in sinus and not spread to other organs.

[Dirty Don]

4-6 weeks is an average for rtx. Everyone responds just a bit differently. Best to you.

[PattyL]

Seems a little long my Dr says 6-8 wks also. 2 infusions 1 in July 1 in Aug. hope to see some results soon. Pred. taper is now at 15mg Hope your daughter is seeing/feeling some benefit soon.

[PattyL]

Hi Pete.

Thank you for the info. I'm on 15mg pred now doc says in about 3 wks we can taper to 10mg I have lung and kidney involvement so now on the lower dose I notice my breathing is not as good. Had lung CT yesterday and seeing pulm doc next mo. Hope the rituxen starts working its magic soon. Just had my last infusion 2 wks ago. Doc says about 6-8 wks.

Take care,
Patty

[PattyL]

Pred. the necessary evil can't wait to be off of it. (hopefully) I am waiting for RTX to work it's magic which I hope will be soon. Thank you for the info. Everyone here is very helpful.

Take care,
PattyL

[drz]

Seems a little long my Dr says 6-8 wks also. 2 infusions 1 in July 1 in Aug. hope to see some results soon. Pred. taper is now at 15mg Hope your daughter is seeing/feeling some benefit soon.

That is usual consensus but some benefits might appear sooner.

[Birdie]

Pred. the necessary evil can't wait to be off of it. (hopefully) I am waiting for RTX to work it's magic which I hope will be soon. Thank you for the info. Everyone here is very helpful.

Take care,
PattyL

Patty,

If it helps your outlook any, I've been on 5mg for over 2 years. It didn't take long to stabilize once I got there and I have virtually no side effects. Would be nice to end this completely but not much hope of that. Any lower and I started to flare with mild WG symptoms within a two weeks. Dang, now I'm thinking... last time I tried to go lower was a long time ago... Where's my pill cutter?

[Green Grass & High Tides]

Here's a cut and paste of some ideas I've jotted down along the way about prednisone. The thing I learned the hard way is that it can cause irreversible damage. Using counteractive meds during steroid treatment has been very helpful as is nutrition, restorative sleep, raising anabolism and reducing internal / external stressors. Pred helped me live and survive but man there's a lot more to it than I realized starting out.

10 POTENTIAL PROBLEMS WITH PREDNISONE?



Prevention of Full Remission?

Disruption of Immunologic Memory Role During Chemo Tx.

Imbalance of the HPA Axis Aggravating Immune Disorders / Causing Psychiatric Effects.

Untreated Physical and Psychiatric Effects that Trigger Autoimmune Disorders.

Subtherapeutic Doses that Treat minor Symptoms but Feed Underlying Disease.

Subtherapeutic Doses contribute to Rituxan / Cytoxan Failure?

Neuroendocrine System Ignored / Left Susceptible.

Supratherapeutic Dose Side Effects are Serious and possibly be irreversible.

Can Cause Long Term Cognitive Deficits.

Can Cause Hippocampal Atrophy (Possibly Irreversible Brain Damage).


The Paradoxical (http://journal.frontiersin.org/article/10.3389/fimmu.2014.00136/full)Effect is the main problem. Prednisone can help but sometimes it hurts too and there’s a chance it ultimately prevents remission. Aside from the usual Systemic Glucocorticoid Side Effects (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2872100/) there is a Paradoxical Effect That May Contribute (http://www.ncbi.nlm.nih.gov/pubmed/24428851) to relapse or even Cause Wegeners Treatment Failure (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3951203/). Long term, subtherapeutic steroid use may actually help minor symptoms but prevent remission. Inhaled steroids (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2080752/) are known to cause HPA Axis Suppression. Iatrogenic Cushing's Syndrom (http://emedicine.medscape.com/article/117365-overview)e plays a role as does (Exogenous Adrenal Insufficiency (http://www.nytimes.com/health/guides/disease/exogenous-adrenal-insufficiency/overview.html)). Supratherapeutic doses (http://www.ncbi.nlm.nih.gov/pubmed/8323489) such as “Pulse Therapy” can save lives but have serious consequences. Psychiatric Complications (http://onlinelibrary.wiley.com/doi/10.1111/j.1440-1819.2011.02260.x/full) may be Neuroendocrine (http://onlinelibrary.wiley.com/doi/10.1111/jne.12265/full)related. Probably caused from HPA Axis Dysregulation wherein (GC) (MR) Imbalance can further aggravate the autoimmune disorders like Wegeners. Irreversible brain damage is documented as well as cognitive deficits (http://ijnp.oxfordjournals.org/content/16/6/1351.abstract). Neuropsychiatric effects (http://www.ncbi.nlm.nih.gov/pubmed/22424158) of steroids is wide ranging and not well understood, but can trigger immune disorders. Any or all of these factors may play a role in achieving a full wegeners recovery and ought to be treated appropriately. (This paragraph is really just a list of some of the facets of this topic, with supportive links and is by no means comprehensive and far from scholarly.)

PSYCHIATRIC EFFECTS:
“An imbalance between central glucocorticoid (GR) and mineralocorticoid (MR) receptors is proposed to underlie the HPA axis dysregulation that associates with susceptibility to psychopathology (anxiety, PTSD).” http://www.sciencedirect.com/science/article/pii/S0306453012002983 (http://www.sciencedirect.com/science/article/pii/S0306453012002983)

STEROIDS MAY PREVENT REMISSION - THE CATCH 22 THEORY:
Although their use may be unavoidable at present, there are some indicators that steroids might be preventing actual remission. Glucocorticoid treatment for wegeners has a proven paradoxical effect (http://journal.frontiersin.org/article/10.3389/fimmu.2014.00136/full). Untreated steroid symptoms (like simple anxiety) (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4293506/)actually have counterproductive / effects on the immune disorder as well as possibly irreversible (http://www.ncbi.nlm.nih.gov/pubmed/25650405) brain damaging effects (http://www.ncbi.nlm.nih.gov/pubmed/11015810) (NIH).

IMMUNOLOGIC MEMORY:
Rituxan is supposed to work by killing b cells and then the body naturally replaces them with healthy b cells (non self attacking). In a glucocorticoid imbalanced system this doesn’t work so well. If b cells are killed and the new b cells are recreated into a hostile environment, an agitated system, then the whole mission is compromised. Prednisone can easily cause a glucocorticoid / mineralocorticoid imbalance (http://qjmed.oxfordjournals.org/content/93/6/323). The HPA Axis Endocrine system gets triggered, aggravating the immune system (http://press.endocrine.org/doi/abs/10.1210/endo.132.3.8382598). Meanwhile the body is reproducing b cells into a disordered, hostile autoimmune environment (http://www.hindawi.com/journals/drp/2012/403908/). At this point the HPA Axis endocrine system is highly involved in “immunologic memory” (http://www.ncbi.nlm.nih.gov/books/NBK27158/). So this hostile endocrine system misfires and fails to tell new b cells to stop attacking “self” cells. This very system in disarray by glucocorticoid imbalance, is now responsible to tell the immune system to stop attacking “self” cells. If it fails. Remission is not achieved.

[Birdie]

That's a lot of research well boiled into a short summary. I know I'm in trouble when I have to look up more than a 1/4 of the words just to get the basics. :)

[Skempins]

Hi Patty,

When you taper off pred, do it very slowly. Otherwise, you may experience more severe withdrawal symptoms.

When I got down to 15 mg, my taper was -2.5 mg/month down to 10 mg. From there, it was -1 mg/month down to where I noticed disease symptoms returning (3 mg in my case). I went back up to 5 mg and called my rheumy. She put me on four weekly rtx infusions and took me off mtx. I finish this round of rtx on Thursday. I'll stay on 5 mg/day of pred until I see my rheumy again in early November.

Other than some sleeplessness caused by solumedrol (steroid given with rtx), slight fatigue the day following each infusion, and an episode of heartburn (calmed with peptobismol), I feel great.

Your description is helpful, but I'm curious as to how you know whether it was the disease symptoms coming back or merely a withdrawal from the prednisone? I'm tapering prednisone now and each week gets worse. For example, I had pain and swelling before I started meds and now it's coming back worse each week, it seems. My tapering is coming down by 5mg every 2 weeks. I'm currently at 10mg. I'm seeing my rheumy next week so I hope to find out more.

I'm also having terrible brain fog.

[Birdie]

Your description is helpful, but I'm curious as to how you know whether it was the disease symptoms coming back or merely a withdrawal from the prednisone? I'm tapering prednisone now and each week gets worse. For example, I had pain and swelling before I started meds and now it's coming back worse each week, it seems. My tapering is coming down by 5mg every 2 weeks. I'm currently at 10mg. I'm seeing my rheumy next week so I hope to find out more.

I'm also having terrible brain fog.

Talk to the doctor about everything, but go slow... prednisone is not such a big risk at 10 mg so you can afford to go slow. Wait longer between reductions and make the reductions smaller. One or two mg a month is better when at lower dose, and wait until you stabilize before reducing again. Also, don't be afraid to return to the previous dose if the lower dose causes major side effects in a day or two.

[Skempins]

Talk to the doctor about everything, but go slow... prednisone is not such a big risk at 10 mg so you can afford to go slow. Wait longer between reductions and make the reductions smaller. One or two mg a month is better when at lower dose, and wait until you stabilize before reducing again. Also, don't be afraid to return to the previous dose if the lower dose causes major side effects in a day or two.

Thank you, that's very helpful!

[Birdie]

Thank you, that's very helpful!

You're welcome. Don't hesitate to ask questions, or just vent/rant/complain/bitch/whatever. All is fair...