Feeling so low and dont know what to do

I lost my mom after a very stressful 6 week ICU stay in March. Since her admission I’ve started experiencing horribly painful psoriasis inside my nose and my existing hideous ear canal psoriasis has broken out to cover the whole of the outside. Despite very recent antibiotics I still can’t sleep on that side due to my ear pain, and can’t sleep too long on my other side due to arthritis pain in my hips being worsened by pressure. I go to sleep normally with no problem but wake up either because of the breakthrough pain, or I’m so hot and sweating (we have a/c in the bedroom and and I have a cold pad and even still I am too hot at night!!) 2.5 - 4 hours sleep is the norm for me right now. 6 on a really good day and the last was January 5th, I know because its in my phone calendar.
Anxiety doesn’t help. Once I’m awake my mind is racing and I am so worried about everything. My ability to carry on work with my health, worrying about the children, annoyed at my husband for not working or being involved bar the school run, vacuuming and washing up, whether I can afford to keep my mom’s house, which is a beautiful house I have lived at since age 13, and the garden here is my therapy. We are uplifted by the wildlife we are lucky enough to experience, deer, rabbits, foxes etc!
In addition to this I am trying to sort my moms affairs amongst difficult family relationships and navigate raising 2 children. I feel my health and sickness level is preventing me being taken seriously at work and negatively affects colleague relationships- for the record only covid symptoms in myself and my family, with one exception, have prevented me attending work in 12 months but as my meds are immune suppressing and my kids are at infant and junior school, a lot of bugs come my way. I feel trapped and if not for my children, I think I would have attempted something stupid. As such I feel more trapped because I can’t even really express my sadness and desperation. I have tried to speak to my husband about how I feel but he is still unable to get up before 11 once he returns from school run or get a job. Now when I mention it he just gets mad or quiet and its just not worth the fights or tension when I’m already so stressed and lonely.
Not really expecting any reply, just needed to state somewhere honestly and openly how I feel without any judgement. Thanks for reading if you fot all this way! :wink: I know- -‘This too shall pass’ but just seems so hard right now.

3 Likes

I’m sorry to hear about so much heaped on you at one time @MommaBear. Your physical condition is robbing you of being able to grieve the loss of your mom and that just sucks! Sounds like you have inverse psoriasis. I know the horrible pain of the ear canal psoriasis. It hit me there and my eyelids…the rest of the psoriasis was mild even though wider spread. I have said it before but worth repeating…A prescription of Protopic topical cured my psoriasis like nothing else in a few days. Truly amazing stuff! I used a q-tip to apply it to my ear canals. I’m think that with all that you have going on, it might help to work at one item at a time…otherwise it’s easy to just get overwhelmed! All the best to you as you process life! And please ask if you want some more thoughts on Protopic.

1 Like

I am sorry for your loss, I can’t imagine what your feeling right now. You have more inner strength than you know, I think we all do.
When my psoriasis was active I also had psoriasis in my ears, I never found anything topical that really worked sadly, biologics are what helped the most for me.

1 Like

Have you thought about a therapist to help with all the feelings and stress you’re having? You can do it online if time is an issue. I do mine via camera. It can help.

1 Like

Protopic is in a category of its own not like most other topical creams. Protopic (Ointment) Uses, Dosage & Side Effects - Drugs.com

My dermatologist has prescribed me some light steroid cream/drops for my ear canals. There are several, you may want to ask about them.

Sorry for your loss. I know the stress is hard on the body and the P/PsA.

With my psychology background I do second the the idea of talking to someone. Grief can be hard to deal with if you are going through your own struggles with your health. You don’t want to get tied up in prolonged and unprocessed grief, or, not grieving as you should and then having to deal with that later on.

Take time to grieve, there is nothing wrong in that. Trying not to grieve and suppressing it is not good for you and will cause further stress an emotional loss.

1 Like

Thank you so much for your kind reply @Amos os I would appreciate more of your thoughts on your experience of using the Protopic, if you don’t mind please? Is it drops or cream/ointment? What sort of steroid strength are we talking about? I’ve been made cautious after more than 2 decades of topical steroids somewhat casually prescribed! Plus I’m just a bit nosy by nature! :roll_eyes:Could be the P in the nose is a judgement issue! :laughing:

Thank you @WallStreet could I ask which biologic you are taking and to share your experience a little please?
My current biologic Humira is one I have been on for more than 11 years now. I think it may be a sign that I need to stop delaying my rheumatologist prescribing me Methotrexate again alongside, as a booster to blocking my condition’s break through symptoms. Unfortunately it made me feel so dreadful before and affected my LFTs really badly, so not something I want to revisit, hence the delay to accepting it, even if she is confident infusions will prevent my previous side effects.

The only positive I can see in MTX is that the nausea and sickness will maybe help me drop a dress size or two!

Thank you both @Bern and @tamac , I have thought about counselling, a couple of friends have mentioned their own experiences with it and recommended it to me. I am making enquiries now I feel more ready to talk.
I’ve had some success with steroid drops sprayed into the ear… however, I saw a wet-eared but well meaning locum GP who told me, get ready, that my ear canals had actually become steroid dependent… and that was now the reason for it itching!! Obviously just to humour this ludicrous suggestion i held off from getting the prescription refilled for a good 6 months. Miraculously my ears have not been able to withdraw from their steroid craving, and ithe psoriasis has since progressed beyond what its ever been. I have now got my addictive steroid drops again but its so aggravating now i struggle with any drops and especially wetting my ears when showering!
Still we persevere!

Thank you again to everyone for taking the time to read and offer your advice, I am always happy to hear and share experiences with P or PsA so I’d love to hear more if you’d like to share anything further. When we lack so much ‘real world’ peer support, here can be such an invaluable resource.

26 years blessed with Psoriasis age 11, arthritis from 17.
Conventional meds, alternative therapies and the more unconventional. I have been there, coaltar in my hair, done that, (in ortho shoes and big floppy hats) probably would have declined the t shirt as I’m more of a wrap dress kind of girl.

I dyed my hair purple, cos I have Always wanted to and why the hell not! Feel just a bit better now already! :slight_smile:

Sarah xxx

1 Like

Good questions @MommaBear. Protopic is not a steroid, thats why I like it so much and is incredibly effective. It looks at feels like vaseline and I use a q-tip to apply it in my ears. The official name for it is Tacrolimus and it is an immunosuppressant topical. When I used it on badly pealing eyelids, it made my face feel a bit flushed for a while. You apply it as thin as you can, it takes very little. Its expensive but I have had the same tube for at least five years. I did all the steroid creams and they were terrible leaving me with thin skin etc.

1 Like

Thanks for highlighting that @Amos, cause I must admit I assumed it was just a version of a steroid cream. But it looks like it’s not? More like a DMARD (immunomodulator or immunosuppressant) for the skin. Does that match your understanding?

Maybe I’ll try it for my new rash on my hand (I developed nasty fluid-filled blisters over the creases on my wrist - it’s going to be super challenging if it turns up on my knuckles or elbows).

Yes it is in a different category of topicals. I was first diagnosed with inverse psoriasis in 2012. It came out of nowhere and was quite bad everywhere on the body where there was a crease…inside of elbows, behind the knees, eyelids and some unmentionable areas. My GP did the whole steroid cream thing which helped but soon as I quit with the steroid topical, my skin was smooth and thin and the psoriasis came back worse. The Protopic (Tacrolimus) dealt with the psoriasis in less than a week and never came back as bad…I only had to maintain it occasionally. Since biologics and now Rinvoq, I rarely see psoriasis. I have used the protopic on poison ivy with good success but that wasn’t what it was prescribed for. It does come with the warnings that we all are used to.

Hello dear. You are suffering, so I’m glad you vented here, to ease the tension and feel ‘heard.’
If I may, I’d like to offer a few ideas. First, I don’t know your age, but if you’re in menopause now or coming up soon, that could explain a lot of the symptoms you describe.
Between 50 and 55, hormone drops can cause most of your anxiety problems, which are serious. Right down to the extreme overnight hot spells. (I did not know I was in meno, so white-knuckled it, 3 years of what I thought was a nervous breakdown. Hormone treatment is easy, and fixed me in a week!)
If this is not you, but you are Type 2 diabetic, the same symptoms can apply based on your glucose control.
You should see a doc, esp a gyno, and then see where your anxiety level is after hormone therapy. If you don’t feel better in a month, ask your GP for a mild sedative like Propranolol or a similar non-addictive anxiety med.
Your ear is reflecting what stress you’ve been suffering. I did all the things I listed above, and four years later I’m still fine! You deserve a break from your anxious brain. Your resilience will pop back and Life will run smoother.
Good luckk and keep us posted.

1 Like

And BTW, I’ve had PA for 32 years, and RA for 10 years. I’m also diabetic. So I’ve been thru it ALL. I don’t mean to say that hormones always make everyone better, but if you’re near 50, it’s a likely diagnosis and fix for what you’re describing.
(I’d tell my husband to get a decent job and keep it, or else move out and file for divorce. You don’t ‘sound’ well enough to support your children all alone, so if he won’t work, he’s making your health worse.
Hopefully he’ll see how serious this is, and what a weak man he is for not helping support his kids. And he’ll keep a FT job. Good luck.

2 Likes

Momma Bear,

I just read your post. Anxiety and PsA don’t work well together. I usually get a flare up if I’m really stressed. Have you been able to get any relief from the stress?

1 Like

Hello MommaBear

It can be hard to make the decision to modify or stop your treatment but I have found that it really comes down to how you are feeling about it, as much physically as mentally.
I have never had to add another biologic to any of my treatments. Methotrexate is a drug that my dr and I talked about but I wasn’t a candidate for, I don’t know how that will effect you but if it can help more than it hinders then it should be considered. That’s the mindset I use treating PsA.
I have tried remicade, humara, Otezla and Cosentyx for biologics. Cosentyx being the one that I have been on for about four years now, it’s working really good for me and has cleared up my skin, nail and most of my joint symptoms effectively.
I hope you are doing well and can find a proper treatment as for the nausea from methotrexate, I don’t know what would help combat that, I am used to treating my gastric bypass related I ate the wrong thing nausea.

@MommaBear, first, I love that you dyed your hair purple! How wonderful!

I can’t give you lots of advice, because I’m honestly in a very similar spot. Carpal tunnel and shoulder problems that require me to be on my back, hips that won’t let me sleep on my back. I’ve ended up on steroids out of sheer desperation.

You’ve had a great run out of Humira, and there are a lot of similar biologics out there (I know cause I’ve used most of em :joy:), honestly if I was in your situation I’d be looking for a new primary medication, rather than adding a conventional DMARD at this stage (then again I’ve been thorough pretty much all the traditional DMARDS and not much response from those).

I’ve started counseling again, I have certainly found it very helpful in the past. I think with such a stressful family situation, and feeling so isolated and lonely, it can make such a difference to how we see the world and ourselves in it.

Do consider if you might need a biologic and let us know where you get to with the Rheumy

1 Like

Hi @Jen75 @Frances and @WallStreet

I think you are most likely right on the new primary treatment being what is needed rather than adding in MTX, particularly as I’m already feeling negative towards it from previously.

Could I ask what meds you are on and previous biological experience if anyone wouldn’t mind sharing?
I researched Humira for more than a year before even attempting to get the trust funding for it so I’d like to do some homework around a feasible next step biologic wise.

@Amos I have heard of Tacrolimus previously, I think from med secretary days. Might it be something I could topically use for my nose as well as ears perhaps? I will raise it when I get to see someone in ENT one day, or GP. I rang up today about my referral which has been accepted! But not urgently as per GP asked cos of covid pressures, so I’m on the ‘18 week pathway’ which we all know is a little quicker in description than fact. Still grateful to be in the system at all though :blush:

I have used Tacrolimus (Protopic) since 2012 and usually on sensitive areas like my eyelids and ear canals. I do feel a bit “flushed” or warm faced sometimes after I use it. It works so well that I really don’t need it for more than 2 applications per day and no longer than 4 days. It doesn’t seem to damage the skin like the cortisone creams did. When I forget to take the q-tips out of my ears after applying it, people give me strange looks as I shop but I just smile under my mask as I wonder what is wrong with them!

Currently, I’m back in the gap - or maybe it’s a new gap? One between my gastroenterologist and a new Rheumtologist. Previously though, I’ve been on Enbrel, Humira, Cimzia, and Stelara.

Enbrel worked beautifully for my joints and energy and I stayed on it about 6 months; it didn’t fail but inflammation arose in my gut so we switched to Humira. Humira worked well for about 3 years, then for the next two year period pretty poorly, and seems to have caused mild neurological side effects which disappeared when I stopped Humira. Next was Cimzia, which was the best for me so far, giving close to a true remission for about two years, still not really failing the arthritis (but the gut inflammation showed up again and was finally diagnosed as Crohn’s). Then Stelara for a year, which was actually as a Crohn’s medication - it was also very good for my arthritis (didn’t fix the Crohn’s, I had surgery for that), but it’s important to note that I had a protocol that was a very big loading dose and then 3 x the normal dose for arthritis, from what I’ve read it’s not a stellar performer for PsA under normal dosing.

That all seems a bit discouraging, because of the number that have failed on me one way or another (and for me, it sometimes is). My old Rheumy though, tells me that I’m just one of those people whose immune system rapidly adapts to find its way around biologics. Most people, he says, are not, and once they find one that work, will get extended periods before they need to change (so that’s positive for you given Humira has been so good for so long). I haven’t yet had a conversation about any of the newer drugs, but have an appointment tomorrow, so better get my research lined up!