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Angry and Worried #280052
03/13/18 07:11 PM
03/13/18 07:11 PM
Joined: Oct 2017
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AussieCowboy Offline OP
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AussieCowboy  Offline OP
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G'day!

This is my first time posting here though I have been doing a lot of reading through this forum. I would like to ask for some help as there is next to zero support here in Australia regarding AS and I feel quite angry about that and don't know where to turn, I have a couple of questions I would like to ask and see if I can get some answers to what has happened recently.

Have had a sore back since about 16yo.,I'm now 55yo
Heart attack at 38yo.
4x CABG Heart Bypass at 44yo, diagnosed with Ischemic Heart Disease and Type 2 Diabetes
January 2018 diagnosed with AS

I just thought that the sore back was my lot in life and many years of nursing being bent over beds and patients etc.... apparently not.

When I was diagnosed in January I was put on Humira and the first two injections worked really well, the pain went away and so did the crippling fatigue.

I had my third injection but I felt very tired for a few days after it but it did go away and I come good for the rest of the fortnight.

I had my forth injection 12 days ago and the next day I felt like I had been hit by a bus, the fatigue came back and I was very tired again and wanted to sleep a lot, I had no energy and I noticed I had pain in the back, I have to take the injection again this Friday but I do have a lot of pain in the back already and still have a few days to go.

I have been hearing a lot about flare ups but not sure what that means so can I ask if someone could explain this and could it be a reason for how I felt even though I took the Humira but still had back pain, I did not take any other medication to help with it.

If there is inflammation can that cause the blood pressure to go high 185/110, I take 3 BP Meds and it is under control but for some reason it went up high.
The liver enzymes also were elevated and the potassium was low but were fine before I started Humira. I'm very compliant with taking me meds everyday.

My Doctor is helping all he can but I don't think he knows a great deal about this and I have only seen the Rheumatoid Doctor once and have a follow up in a months time but I discussed yesterday with my Doctor if I should stop the Humira and he said Yes until I see the Rheumatoid Doctor but if there is another reason why I have had this sudden change in everything other than being the Humira then I would prefer to stay on it.

Could what happened have been a flare up and when that happens it does this sort of thing to you in regards to the fatigue and pain coming back.

Sorry this is long and boring

Thankyou.....Colin

Re: Angry and Worried [Re: AussieCowboy] #280053
03/13/18 09:55 PM
03/13/18 09:55 PM
Joined: May 2010
Posts: 1,419
Whidbey Island WA
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WhiteCell Offline
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Hello. Glad you posted.

I'll try to help.

Inflammation has a life of it's own. So the rule of thumb is that while Humira does relieve the inflammation, the disease re asserts itself and causes just as many symptoms as prior to the infusion. The fact that you got relief tells me Humira is working. So my 1st question is can the dose be increased?

Inflammation can indeed cause elevation in blood pressure but more than likely pain will increase it. Next question, did your BP trend down after that reading? and do you routinely check your bp and keep a record of it?

A flare up occurs when tumor necrosis factor (a cytokine and protein) binds with its receptor sites in our tissues. The basic cause of our illness is TNF invading our tissues in very high amounts...more than most people. Many factors cause flares but, stress, lack of rest but mostly it's just the way the disease works. TNF invades tissues >causes inflammation>causes pain and deformity over time.

TNF blocker medications attach to TNF and don't allow it to attach to the receptor site thereby decreasing the effects of the disease process.

Question # 3. Can you contact your Rheum and ask for an earlier appointment? I would encourage you to be assertive and not stop the drug until you see the doctor as it sounds like the drug is working.


Starting at 18 yrs old > Reiter's Syndrome. Diagnosed 2001 Ank Spon.
Started Remicade 2002 - 5mg/kg every 7 weeks.

Right Eye Glaucoma- Trabeculectomy/lens replacement 2006.
Right eye DSEK Cornea Transplant 2009.
Right eye Ahmed Shunt 2016.
Right eye DSEK Cornea Transplant 2016.
Supra Ventricular Tachycardia. 2004. Cured by RF ablation 2008.

ICU RN - Seattle, WA

~Grasp The Challenge and Succeed~
Re: Angry and Worried [Re: AussieCowboy] #280054
03/14/18 12:56 AM
03/14/18 12:56 AM
Joined: Jul 2006
Posts: 6,576
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Banana Offline
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Banana  Offline
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Hello, very sorry for your suffering. High BP can be caused by pain and or inflammation or cardiac issues

Humira worked a long time for me, but many of the meds only worked for a short time. They would work great and then suddenly "turn to water". the only way I can describe it. I would wake up and it was as if I wasn't on any meds. Could that be what happened? I ask because doctors told me I (like you) had the disease for many years untreated. The body lived with the inflammation for so long that it would fight the meds and I would develop antibodies against the meds.

I have always needed addtional medications to combat the antibodies. Like MTX or arava or immurne etc. At one point I was on three plus streriods to tap down the inflammation. When I got on the last couple meds, because of the long history of building antibodies, that I now take a steriod taper before I take the new med.

Not sure you can take steriods with diabetes or your cardiac issues. Sorry, living with inflammation long term causes cardiac issues.

Anna


Actema IV once a month (with pre loading for allergic reaction), Cymbalta x1 daily, Arava 20mg daily. Diagnosed with AS in 2004, suffered undiagnosed since 1982.
Re: Angry and Worried [Re: AussieCowboy] #280055
03/14/18 07:39 AM
03/14/18 07:39 AM
Joined: Oct 2017
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AussieCowboy Offline OP
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AussieCowboy  Offline OP
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G'day

Thankyou for your replies, I appreciate it.

I went to my Professor Doctor today who put me on to the Rheumatoid Doctor and had a good talk with him. He said for the moment to stop the Humira until he looks at my bloods, he is concerned about the spike in the BP and the Liver enzymes going up and Potassium being low, he suggested I may have developed antibodies to the Humira?? He will call me Friday and let me know what to do. BP was 147/94 it has come down a little, he put me on another BP pill for the moment. That's 4 now.

I gave blood again today to look into anything that may have caused the fatigue to come back, this Doctor has ordered some other blood tests which I will go tomorrow and do and then sit back and wait to see what I have to do. The pain has come back only after a week from the last injection?? I will mention that last Winter I got a good dose of Uveitis, it was quite severe and this lead to the Eye Hospital in Sydney suspecting AS and they did the HBLA-27 blood test and came back positive and so it went from there to where it is today.

It certainly is an awful disease and one I guess you have to stay well on top of and looks like so many things can go wrong. The Doctor could see I was serious about getting this sorted out, it is early day with the diagnosis (January) and I guess working out what does work and what doesn't.

I feel for you guys that have it worse than me. I'm sure one day i'll be in the same place. Take care of yourselves.

I will post with the results when I get them and hope it can help someone else.


Last edited by AussieCowboy; 03/14/18 07:49 AM.
Re: Angry and Worried [Re: AussieCowboy] #280056
03/14/18 12:26 PM
03/14/18 12:26 PM
Joined: Jun 2016
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Winston Offline
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Winston  Offline
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I hope they get you sorted out, AussieCowboy. Perhaps discuss with your doctor the possibility of switching to Enbrel if it turns out the Humira has stopped working. There's a lower likelihood of developing antibodies to Enbrel, as Enbrel is a fusion protein drug as opposed to a monoclonal antibody drug.

Re: Angry and Worried [Re: AussieCowboy] #280057
03/14/18 02:13 PM
03/14/18 02:13 PM
Joined: May 2010
Posts: 1,419
Whidbey Island WA
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WhiteCell Offline
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The medication for those of us who also suffer from uveitis is typically Remicade. As you can see from my own history, this issue has followed me like a junkyard dog. If you find that you have developed antibodies (which I doubt imho) you may want to ask your doctor about Remicade. Hypertension is a fickle demon. I would suggest that you take your BP 4 times a day and write those numbers down along with your heart rate. Share these with your doctors. Office BP's can be variable. Best of luck with this process.


Starting at 18 yrs old > Reiter's Syndrome. Diagnosed 2001 Ank Spon.
Started Remicade 2002 - 5mg/kg every 7 weeks.

Right Eye Glaucoma- Trabeculectomy/lens replacement 2006.
Right eye DSEK Cornea Transplant 2009.
Right eye Ahmed Shunt 2016.
Right eye DSEK Cornea Transplant 2016.
Supra Ventricular Tachycardia. 2004. Cured by RF ablation 2008.

ICU RN - Seattle, WA

~Grasp The Challenge and Succeed~
Re: Angry and Worried [Re: AussieCowboy] #280059
03/14/18 02:34 PM
03/14/18 02:34 PM
Joined: Mar 2013
Posts: 1,967
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SouthernMoss Online
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SouthernMoss  Online
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Welcome Colin. I'm sorry you are having a rough time. It's unfortunate that finding the right treatment takes a lot of trial and error.

Be sure to get exercise every day. It doesn't have to be strenuous. Stretches, walking, swimming, whatever activity works best for you. But movement is important for AS. It helps fight inflammation. And it will also help with your blood pressure issues.

I agree with White Cell about taking the BP multiple times a day. When I first started having BP issues, I discovered that my BP was spiking first thing in the morning. I was taking my BP med in the morning and my doctor determined that my med was not lasting the whole 24 hours, so he adjusted my dosage to take a whole pill in the morning and a half pill in the afternoon.

Keep us posted.


Ginny - 57 year old female
Dx with USpA in March 2013; changed to AS in July 2015
Iritis and Scleritis
unicompartmental knee replacements: right-June 2014, left-Aug 2018
MTX, Humira, Cyclobenzaprine, plus Celebrex as needed
Supplements: Folic Acid, Vitamin A, Vitamin D, Calcium, Fish Oil, Melatonin, Culturelle probiotic

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