Denied medical care because of GCA and Actemra.

[phebamom]

In the US. PMr 20 plus years, GCA 12 plus. Full dose Actemra infusion monthly, 5mg. prednisone. Actemra worked great at first. Now SED rate creeping back up. I have a chronic adenoid tissue infection, at least 6 yo 8 years. Hard to remember when it really started. ENT was planning on full course of antibiotics then surgery. Adenoids causing sleep apnea. BP is 180/103, No combination of meds will control it. Am showing signs of heart failure. I mentioned to ENT during visit that I had GCA and was on Actemra. ENT did a total 180, refused to treat, stating that I would not heal and nothing would help me. This happened right in front of my husband. Thank goodness I had a witness or I would not have believed it. ENT told me to go home and irrigate my sinuses. CT scan of sinuses show sinuses are clear. This is entirely in adenoid tissue. A simple surgery would fix it, yet I can't get it fixed. I saw a 2nd ENT who put me on Augmentin. Augmentin caused a bad attack of vertigo. Ended up in ER. ENT referred me to a surgeon. Surgical consult is January 17th. If BP keeps on going this way I may not be here on January 17th. My rheumatologist, who has always been good, just laughed at my concerns about high BP, stating that since all his family members have high BP, it's okay to have it. No one specialist has all of the connections, information and not one person is clearly seeing a bigger picture. I am thinking I need to stop Actemra, and just up my prednisone. Anybody else been refused treatment because of GCA/PMR?

[piglette]

My orthopaedic surgeon was none too keen on operating for a hip replacement due to me taking steroids.

[PMRpro Ambassador]

Quite a few people have had difficulty finding surgeons who are happy to do joint replacements with patients on pred. I think you would have to stop the Actemra anyway - that was one of the things Dac2Cue mentioned for his spinal surgery.

But adenoids - not come across that before.

[phebamom in reply to PMRpro]

I was absolutely flabbergasted when I learned my problem was my adenoids. They usually go away after childhood. Mine have come back. I have been hacking out a scab the size of a nickel for about 6 or 7 years. I was tested for COPD because they thought it was a mucus plug. Lungs are fine. When I lie down at night I start choking right away. If I fall asleep it gets real bad, I stop breathing, sleep apnea big time. Two ENTs did a scope. Both saw the problem. I have been referred to a surgeon, appt, is Jan. 17th. I don't think I will make it until then. Will be making phone calls next week. Primary doctor is scheduling a brain MRI and an echocardiogram. We are charting BP, it is highest at night and in morning when I first wake up. It drops at least 30 points systolic as soon as I am upright. From what I read adenoid issues in adults is becoming more common. The blame is suspected to be pollution, stress and viruses.

[izzyart in reply to phebamom]

See an eye, ear, nose specialist...i had my adenoid surgery 15 years ago and since have had no problems...it was before my pmr and prednisone though, but i was on bp medication.

[PMRpro Ambassador in reply to izzyart]

That is what ENT is, ear nose and throat ...

[Daylily2000 in reply to phebamom]

how distressing for you! Have you considered sleeping in a more upright position until you see the surgeon? Use a recliner, perhaps.

[BabyRuby1]

wow I just have PMR. Almost two years now on 2 mg and doing good. Don’t have any other issues besides PMR and it is under control so far

I have no idea about some of your other ailments…sorry