Has anyone tried this treatment? I will be starting it soon! My sjogrens has effected my whole body and has attacked my brain. It is rare. I also have the dry eyes, dry mouth, dry skin, dry hair, ect.
I also have psoriatic arthritis.
I have been on plaquenil, azulfadine, methotrexate, enbrel, humira, and remicade. Nothing has worked besides the enbrel but I had to go off for side effects.
Just wondering if I am alone with the brain fog, memory issue
and concentration.
Also I am in denial at times. I pretend I am fine and push myself a lot.
I just want to be fine.
Hi Country girl I have the same thing with the brain fog, los of concentration, memory loss. I also find it hard to thing of the word I am trying to say, I used to have a very wide vocabulary now I really struggle with what I am trying to communicate to people. As I am only 35 all the doctors think I am putting it on. I have been suffering for 14 years now with no medication untill this year a Dr put me on plaquenil bit it was affecting my eye site so I stopped that, I now in the process of trying to find anew rehumi, so I can try and get some help, as like you it is really starting to take its toll on my body and like you I just try and push through the fatigue to try and get everything done that needs to be for the day my family of 6. Do find that cause you don’t looks sick to others, that they find it hard to understand what you are feeling, and they seem to forget that you are sick and suffering? I am so sorry to hear that you are feeling so bad as I know how much it sucks and it is hard to stop doubting yourself. I hope that to a degree it makes you feel better that you are not alone as it has made me to hear the same. Hope to keep in touch with your progress and to help work through any confusions,doubts or worries that you may need to share. Take care.
So sorry you have had to go through so many meds in search of relief. I am on the very same journey, but not to the infusions yet. I also have PsA. I was just started on Otzela, but have had my head in the bucket since the first pill. As much as I wanted this to work, it just isn't going to be it for me, but it may be the magic for someone else!
I was on Enbrel for 2 years and it really helped, but finally the UTIs were too much. Other than the NSAIDS, it has helped me the most of anything.
It's an on going process to accept being ill, it won't happen overnight, and there will always be instances where you push yourself, but in time, you push less, as it pushes back!
There is always hope, always a new med on the horizon. I try anything that is offered, as all of my grandkids have psoriasis.
I hope this med is the one for you and that it does you nothing but good! Keep looking up!
Hi country girl. I feel for you. Before all my alternative meds I was so dazed and confused and depressed beyond words (literally). I hope you feel better soon:)
Hi, I am so sorry you are going through so much right now. Seeing dr. after dr. with all of the complaints and symptoms can lead you to doubt yourself. And hearing that “you don’t look sick” from friends and family just feeds that self doubt. You know your body better than anyone so when you have done for your family what you are able to do then you know you’ve done your best. It’s a shame that we constantly feel the need to prove we are truly sick. It’s maddening. I hope and pray this new medication brings you relief and soon. I am so over trying to convince people how bad I feel at times. I have been trying to take care of me otherwise I’m no good to anybody. My brother has psoriatic arthritis and is receiving the medicine you spoke of and he says he is starting to feel better everywhere. It’s taken 3 infusions to begin to work. Good luck and please don’t let others make you doubt yourself if you’re like me you don’t need help in that area.
Hey, I just wanted to add that the brain fog, memory issues and confusion can be made worse by fatigue and stress. Even if you aren't in a full flair the disrupted sleep we get can aggravate it. Be careful about pushing yourself too hard. Even if we didn't have this you should listen to your body….it may communicate a little differently now but it still needs to be paid attention to.
I am dealing with the neuro issues too, though they are still trying to get to the bottom of the form of it. Though we can't control this disease we can certainly do some things to keep it to a dull roar. You aren't alone….I hope you know that.
sadymay, thanks for your positive input here for country girl, on the Rituximab. PsA can be a very aggressive disease, and no one would know this better than a Rheumatologist.
country girl, I hope that you find this new med to be your answer to slowing down the PsA.
Nope, not alone with the brain issues. I see an MS specialist next month, but if that is not the issue, then it is on to a rheumie that specializes in SS/CNS or whatever issues.
While at conference this year this was discussed as a very common complaint. I hope it’s not scared you or made you feel isolated. You are getting good treatment it seems, which is a blessing. I have been unable to get the treatment I need and suffer permanent problems now as a result, including cns issues. I pray for an answer soon, but that is going to take a doctor with a clue. Little short of those in this part of the country I’m afraid.
No havent had any meds besides Plaquinel and prednisone for my lupus and SS… But i do find myself having these brain fog issues alot more … Its like i know what i wanna say and how i wanna say it but it comes out in a way that no one around me knows what i mean ? Hmm ?? And the sudden loss of words when im talking about something … Idk but i was told by a lupus friend that i should be seeing a neurologist along with all the other docs ? Anyone wanna comment on that ? I could use that advice…
Yes, I understand the sudden loss of words. It is very frustrating. The other thing I deal with is suddenly just saying the most socially inappropriate comments. Not extreme, just really thoughtless. It is like the check between my brain and mouth goes on the fritz. I was not to this extreme before. It is embarrassing.
Niki said:
No havent had any meds besides Plaquinel and predwnisone for my lupus and SS.. But i do find myself having these brain fog issues alot more ... Its like i know what i wanna say and how i wanna say it but it comes out in a way that no one around me knows what i mean ? Hmm ?? And the sudden loss of words when im talking about something .. Idk but i was told by a lupus friend that i should be seeing a neurologist along with all the other docs ? Anyone wanna comment on that ? I could use that advice...
I have had the infusions but sadly, I couldn't finish them. Extreme depression, personality changes, and my brain 'fog' became worse. My nerves also became an issue. I wish I could have been a 'bearer' of better news but remember... Just because it didn't work for me doesn't mean the same outcome for you! Good luck!!
Thank You for all the replies. I am waiting on my insurance getting this approved. My Neuro had me do a lot of tests before hand so that I am able to withstand the treatment and also he is doing a before and after testing to see if the treatment worked mainly focusing on the lessions on my brain and of course slowing down the progressions of this disease and help the symptoms to be less.
