Cosentyx questions
Posted , 6 users are following.
Im sure this has already been discussed but please bear with me.
Im a 38yr old male psa diagnosis for aprox 3yrs. Im in decent shape and exercise 3 or 4 times a week. I was on enbrel since i was diagnosed and had kind of hit a wall with it. My doc switched me to cosentyx. Im in week 4 of loading and have not seen the benefits that i expected...worsening knuckle pain and shoulder pain.
Is this normal? I mean does it have to build up in your system before i get relief.
Thanks in advance.
J.P.
0 likes, 9 replies
sheila65847 jlogan4401
Posted
Hi JP
forgive me - I'm responding to your question with a question - which country are you in ? I'm in the UK, my rheumatologist wants to prescribe Cosentyx for me but he tells me that it's not possible at present as the NHS (NICE) are still I negotiations with Novartis (pharmaceutical Co ). Have I been misinformed? My treatments so far:
DMARD's: Methotrexate, Sulphasalazine, Leflunomide
Biologicals: Enbrel, Humira, Stelara, Cimzia
all to no avail. Grateful if you or anyone else has further information
sheila
tony35673 sheila65847
Posted
Depends on your country of residence I think: I had no trouble getting hold of Cimzia or Cosentyx; however, our Govt hasn't approved Actemra yet so I recieved that free from the pharmaceutical company, presumably part of a trial.
joanne23chick sheila65847
Posted
Hi sheila I live in north Devon and my rheumatologist has just started me on cosentyx from 20th May 2017 didnt know it hadn't been passed by NICE yet.
Really hope it works as tried methatraxate,lefluimide,aprenilast,gobuline and enbrel.
hate being not being able to function like a 40 ur old instead of 90 ur old
tony35673 jlogan4401
Posted
I'm injecting Cosentyx at the moment, just finished the four weekly jabs and due for the first monthly next week. I can't go onto anything else until I've tried Cosentyx for 12 weeks. Presumably this means you have to give it a minimum of 12 weeks before you can expect a reaction. I saw the Rheumatologist last week and he informed me my ESR and CRP levels were very low, into low single figures, so he has hope. I have noticed a very slight difference, not enough for me to share the Rheumatologist's positivety, but I still have six weeks to go so we'll see. I've tried MTX, Hydroxychloroquine, Sulphasalazine, Actemra, Cimzia, Leflunomide and now Cosentyx. Same as you so far - no joy. The Australian Govt only allow five trials of biologics for RA, I've tried two so far, and three for PsA, currently on my first. Once you've tried the five for RA and three for PsA, the Govt wipes its hands of you. I'm not holding out any hope for something to work, my particular strain of RA/PsA is extremely aggressive and is spreading like wildfire. I think perhaps I'm one of the untreatables. Started off as just painful forearms, t now affects left thumb, left ring finger, right index finger, wrists, forearms, elbows, upper arms, shoulders, neck, lower back, right hip, left big toe, balls of both feet and I also have nodules in the lung. Due to the assymetric nature of whatever it is the Rheumatologist has revised his diagnosis from RA to PsA Mutilans which he informed me is the most severe and disfiguring form of the disease, really good of him I thought. Luckily, I'm dog ugly to start with so the disfigurement probably won't make much difference in the looks department.
joanne23chick tony35673
Posted
joanne23chick
Posted
Sorry pressed send by mistake tony. Just wondered how things are going with cosentyx I am now on month five and swelling getting less but pains are not and finding more area that are stiff or hurt so much makes me cry. But rhemotologist says oh great skin clear and swelling going sown that's great we can go to six months reviews now was on monthly review due to complication with meds causing hospital stays due to pulmonary embolism x3 extremely heavy bleed resulting in blood transfusion x7 and possible permenat lung damage (which my rhemotologist said not caused by meds,but my respiratory do s are saying yes some of tried meds may have caused these issues).
richard_89931 jlogan4401
Posted
Apparently it takes about 3 months to kick in properly...
sheila65847 jlogan4401
Posted
Hi folks
Follow up to my post a year ago & hopefully add something or find something for me. Cosentyx was licenced by NICE mid June 2017 for PsA though had been in use for Ank Spond for a long time. I started taking it 29th June. Initially excellent response, Jul-September inflammatory markers dropping steadily, more energy, feeling better! At last, I thought, this is the one! I had a similar good response to Humira 3 years earlier but then developed antibodies to it following severe pneumonia. I'd waited 8 months for Cosentenyx and was hopeful as it targets different things to other biological therapies. PAPAA has all the techy stuff. Anyways from October CRP back to 95, ESR 49, lymphocytes, flats low and this is much the pattern. I receive methyprednisilone infusions every other month & cortisone injections on my month in between, in worst affected joints. My rheumatologist (brave, patient man) has said we've reached the end of the road currently however new drugs are being developed& licenced so I remain hopeful. He has referred me to a Professor ********. I will wait and see, research needed before I post on a public forum, you will understand I'm sure - no false hope or info. I only post the truth about my experience, I have been hurt by another forum user who suggested my continued high inflammatory markers were "unrealistic". I wish that was true. Last week CRP was 90, ESR 62. I do all I can to manage my condition, really focused on diet at present - anyone got good news, to share?
At the risk of boring you regular users here's my list of tried & tested. I'm willing to share other info or via PM but don't want to bore you all:
Methotrexate
Sulpasalazine
Leflunomide
Apremilast
Humira
Enbrel
Cimzia
Stelara
Cosentyx
Dates, notes, side effects all documented. I take responsibility for managing my condition as best I can. Just recovering from pleurisy so very weak and tire easily, but improving. Try to eat properly, very little alcohol, exercise etc. We got to do what we can.
Wishing you all well, special regards to Robert
Sheila
julia61451 sheila65847
Posted
Hi Sheila,
I'm new on here and looking for some advice please. Identified with your very interesting post. I was diagnosed with PsA a year ago but had symptoms (nail psoriasis) since I was 14 - I'm now 46. Have been previously misdiagnosed with Fibromyalgia and endured Gabapentin, Meloxicam & Amitripyiline to no avail. Main deformity and source of pain is in fingers but have significant stiffness in shoulders, lower back/hip & legs. Also diagnosis of trochanteric bursitis in hip but after 2 years of steroid injections and physio, its progressively getting worse. I wonder if it's the PsA but rheumatologist says no. Since the PsA diagnosis, I've tried Methotrexate but suffered hair loss; now 12 weeks into Sulfasalazine but no benefits and now beginnings of hair loss again plus heavy breathing, raised blood pressure, WBC & CRP levels. I've been off work for 12 weels now and can't sit/stand/walk for longer than 30 minutes without a lot of main. Due to see rheumatologist next week - any advice or suggestions please?
Kind regards
Julia