Has Anyone Tried Iv Steroids Rather Than Oral Steroids

[goawaypots!]

Has anyone tried IV steroids rather than oral steroids for a pots flare? Oral steroids did not work for me so a short course of high dose IV steroids has been recommended instead. Has anyone tried or had success with this?

[corina]

Hi goawaypots!, welcome to the forum! I'm sorry I can't rally help you with your question, but maybe others can chime in. Just wanted to welcome you!

[diamondcut]

I have had steroid injections for my Migraine, it didnt effect my BP or heart rate so i guess for me it wasnt a bad experience, but thats not the same as IV i guess.

Im interested to know how do you hope it will help you?

[goawaypots!]

Diamondcut, the hope is this would improve my pots symptoms. There are two possible theories behind this. 1) In some cases pots can be caused from an autoimmune condition and steroids can help "calm" the immune system down. 2) High dose steroids can cause water and fluid retention in the body. Pots patients can be chronically dehydrated and have low blood volume. Steroids can help with this. It appears as though my doctor has seen some success with this in some of his patients. However, every case of pots is different and I think it is pretty rare to have a doctor recommend this. Steroids are not without risk hence the reason I am doing some research to see if anyone else has had success with this. At this point I am willing to try almost anything that might help.

[kluesyk]

Steriods DO help me, but I have an autoimmune component to my problems. Have Hashimoto's and mixed connective tissue disease 20yrs ago, that dr still thinks is causing problems even tho my ANA is neg.

A kenalog/celestone shot in my hip will give me not total relief, but a huge difference for about 2 1/2 weeks, then it goes back to the way it was. Unfortunately steriods have bad long term side effects, so I only use that when I have to be on, such as flying in an airplane, ect. I run around like crazy trying to get everything done in the short time I have before the muscle weakness, shaking, pain, migraines, dizziness, tachycardia and mental fogginess returns.

Newest failure is my immune system....low CD4 and CD8's which will jump from around 200(CD4) to 500, 1 1/2 weeks after a steriod shot, so my dr is looking into WHY steriods lets my immune system recover. My CD counts go back to low after a few weeks.

There definately is a connection in my case, just wish drs could figure it out.

[diamondcut]

That is very interesting, i am having my second steriod injection next month so will be able to gauge it more.

I have a feeling i too could have autoimmune issues going on here, I am lucky in that my GP is sending me to an Immunologist, however my frined does not have POTs but fibro, her Drs is not so helpful.

Kluesky, if presented in a situation trying to get you GP give you a referral to an Immunologist, what is the best way to ask do you think for her? Its interesting that a normal ANA can be found yet so much further testing could need to be done. I just know for some its a battle getting infront of the right people

[Lemons2lemonade]

What type of steroids? I had one solumedrol bag iv for 3 days. It made me the worst I have been since getting this but at the same time, a year later I am up and moving around. Do you have autoimmune disease? I ask because steroids typically stop.the damage from occuring instead of actually repairing anything as far as I am aware. Anyhow, the iv bag gave me terrible anxiety and tachycardia.

[Friedbrain]

Have been out of town so did not see this thread until just now. You are doing the right thing in researching this. At the top you mentioned IV steroids vs oral, but then later mention a shot. What type of steroids and at what doses and for how long each are you talking about, for comparison's sake. The reason I ask is because there is a significant risk in taking high dose steroids (or even moderate dose) for "too long", and in not tapering properly, which can result in secondary adrenal insufficiency ("SAI"), a total PITB that can last years. I communicate with others with SAI and, while many don't know the cause, sometimes it's from medically necessary steroid treatment.

Fwiw, when I was hospitalized 10 ys ago, I was put on high dose IV solumedrol (I don't remember any side effects, but then again, I was very sick and even lost ten pounds, so maybe not typical?). They didn't know what was wrong with me at the time, tho I was experiencing neurological problems similar to MS; and had/ve autoimmune problems, so maybe they thought it was a logical stab in the dark. After I was sent home six days later, I tapered off using oral steroids over a period of two or three weeks and during that time, my neurological problems significantly improved (tho they never associated the two, more recent thinking suggests maybe they were directly related). Assorted severe heatlh problems continued for many months, docs here and there, this specialty and that specialty, resulting in several diagnoses, one of them being tada-adrenal insufficiency. It's now many, many years later so is impossible to know if I was having AI problems at the start of all this and it was only picked up later, or if the high dose steroids in the hospital and too-quick taper resulted in SAI......but I've been on cortef ever since.

Also fwiw, because new docs think that the cortef may be helping both as support for AI AND for suppressing autoimmune problems, they are talking about me trying an immune suppressant (azothioprine?) instead of steroids to specifically target the autoimmune probs instead of relying on the cortef. This is a rheumatologist who suggested this.

Good luck!

[goawaypots!]

Friedbrain, I was referring to a short course (less than 5 days) of high dose IV medrol. I have tried a short course of oral steroids in the past but it did not help. My pots has flared up really bad over the last couple of months and nothing is helping my flare.

I'm not sure if my pots is autoimmune related or not but as far as I know I do not have any other type of autoimmune issues. It sounds like IV steroids are not something that is routinely recommended for Pots patients. I will just have to weigh the risks and benefits.Thanks everyone for all the information.